Registration of personal factors of patients in the general practice: which are important to register according to general practitioners?

Registration of personal factors of patients in the general practice: which are important to register according to general practitioners? A Delphi study Author: Supervisors:

Niek Stoop [email protected] Kees van Boven [email protected] Huib ten Napel [email protected] Annemarie Uijen [email protected] Department of Primary and Community Care

Report of the research training internship Internship period: Duration internship: Date of report: Number of words:

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February – April 2014 3 months 30 April 2014 4971 words

Contents ………………………………………………………………………………………………………………………………… 2 Preface …………………………………………………………………………………………………………………………………… 3 Abstract …………………………………………………………………………………………………………………………………. 4 Introduction …………………………………………………………………………………………………………………………… 5 Research Question …………………………………………………………………………………………………………………. 6 Materials & Methods ……………………………………………………………………………………………………………… 6 Study Design …………………………………………………………………………………………………………….… 6 Sample Selection ………………………………………………………………………………………………………… 7 Selection of an initial set of personal factors ………………………………………………………………. 7 Techniques and instruments ………………………………………………………………………………………. 7 Results …………………………………………………………………………………………………………………………………… 9 Selection of the members of the expert panel …………………………………………………………….. 9 First round …………………………………………………………………………………………………………………. 9 Second round ……………………………………………………………………………………………………………… 9 Third and last round ……………………………………………………………………………………………………. 9 Discussion ………………………………………………………………………………………………………………………………. 11 Strengths and limitations …………………………………………………………………………………………… 14 Recommendations for future projects ……………………………………………………………………………………. 14 Conflicts of interest statement ……………………………………………….………………………………………………. 15 Reference list …………………………………………………………………………………………………………………………. 15 Appendices .……………………………………………………………………………………………………………………………. 16 Appendix 1: Demographic characteristics of the members of the expert panel …………... 17 Appendix 2: Overview of included and excluded items for each category …………………… 18 Appendix 4: Clarifications submitted for items with no consensus ……………………………… 20 Appendix 3: Limesurvey questionnaire, round 1, 2 and 3 ……………………………………………. 26

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Preface This is the report of my research internship, which I followed at the Department of Primary Care of the Radboud University Medical Centre Nijmegen. Because I intend to become a general practitioner in the future, I am glad that I could follow my research internship at this department. I want to thank Kees van Boven, Annemarie Uijen and Huib ten Napel for their guidance. I was able to carry out this research and improve my research skills with their support and advices. I learned a lot about all different aspects of research during this internship. Niek Stoop Nijmegen, April 2014

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Abstract Introduction: Personal factors, one’s personal background, are sometimes registered in general practice (GP), but not consistently, systematically and with standardized terms. These factors can be used as background knowledge during a patient-GP encounter and can have an influence on the policy of a treatment. Aim: A Delphi study was undertaken to create a list of personal factors, which should be routinely registered for every adult patient in general practice. Methods: First, we reviewed the state-of-the-art literature and identified a draft list of 60 items. Then we conducted a Delphi survey among 26 GPs in 3 rounds, to achieve consensus and develop a final list of personal factors. Results: 20 out of 85 items were selected for inclusion in the final list of personal factors. During the first round, 25 new items have been added to the initial 60 items by the members of the expert panel. In three rounds 56 items were excluded. No consensus was achieved for 9 items. Conclusions: The final list of items is usable for registration of 20 personal factors selected by GPs of the expert panel. Further research is needed to identify which items from a patient’s perspective are valued as important for registration in the GP setting, to create an ultimate list of personal factors.

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Introduction Personal factors are very important in everyday general practice. Demographic variables, socioeconomic factors, biographic data, lifestyle factors, life events and personal work related factors are the main contextual (personal) factors which form the background of the actual contact between patient and the health care professional. In the past, when paper records were used to register patient data, important personal factors were written on the main page of the medical records. These data gave general practitioners (GPs) a clear view of the personal factors of a patient. With the introduction of the Electronic Medical Records (EMR), this overview page disappeared. Only a few personal factors are consistently registered in the EMR, others are stored in patient episodes or in free text. In general, GPs know most of their patients well and are aware of the personal factors and circumstances of the patient. Sometimes, these personal factors are not documented, but are only remembered by the GP. Recent research has shown that GPs value personal factors as being very important for the continuity of care1. Personal factors become more and more important in the set-up of an individualized care plan. The process of incorporating patient context into care planning is known as patient centered or personalized care. It answers the question: ‘What is the best next thing for this patient at this time?’2 Personal factors of patients are not consistently registered in the general practice or may not be recognized as personal factors as such. There is a lack of an easy accessible and neatly arranged view of patient contextual data in a lot of different EMR systems to support decision making. Besides, there is not a commonly used standard list of personal factors among GPs. Next to the concept of personalized care, which is of importance to traditional practice, more and more doctors work part time. The exchange and sharing of personal factor related information is necessary to contribute to patient centered care. Therefore the use of a classified set for registration of patient factors becomes important. This may improve the quality of personalized care. Personal factors can be described using an international classification or standardised list of codes. It is possible to register different aspects of functioning of a patient using the International Classification of Functioning, Disability and Health (ICF). The ICF can be used alongside the International Classification in Primary Care (ICPC). The ICF provides a framework to describe human health and some health-relevant components of well-being and contains a classification of different components: body functions and structures, activities, participations, environmental factors and personal factors.

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The last component of the ICF, personal factors (PF), is not classified because of the large social and cultural variance associated with them, but a definition for PF is given in the ICF.3 The setting in which personal factors of a patient are used, defines which personal factors are important to register. For example, a rehabilitation specialist might want to register other personal factors compared to a surgeon. Up to now, no study was conducted to propose a list of personal factors, which can be used in the daily practice of the GP. Our aim is to create this list of personal factors in this study. Not only the GP can register personal factors. Patients, as primary custodians of this information, could help collect and register these factors too. We will limit our research to develop a list of factors in 5 categories: General personal data, social context, lifestyle factors, life events and work related personal factors. These categories are derived from a proposal, developed by the ICF expert team of the Dutch Collaborating Centre and presented at the Network Meeting of the WHO in Brazil, 20124. This expert team based the proposal on an exploration of international articles concerning this subject. Categories such as psychological assets, mental factors and personal factors related to disease are not included, because it is still difficult to rate and describe factors from these categories. Further development of a rating scale for these factors is necessary and needs to be developed.

Research question Which list of personal (contextual) factors should be registered routinely for each adult patient in the electronic medical record (EMR), for use of these factors as background knowledge during patient-GP encounter and to incorporate in care based on the underpinnings of the patient-centered approach?

Material & Methods Study Design We used a Delphi method with an online questionnaire to develop the list. The Delphi survey is a group facilitation technique, which is an iterative multistage process, designed to transform opinion into group consensus.5 Therefore, it is an excellent technique to achieve consensus to develop the list of personal factors. Members of our expert panel were able to propose their opinions and the reasons for including or excluding a factor in the definite list anonymously. Participants did not meet with each other face to face and therefore they can present and react to ideas unbiased by the identities and pressures of others6. The collected opinions and remarks were summarized for each item and are displayed in the next round. Members were encouraged to revise earlier answers in light of the replies of other members. We aimed to achieve consensus in three rounds and ultimately, to create a list of personal factors for use in the general practice.

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Sample selection In qualitative studies, it is not possible to determine the sample size of the study group in advance of the study, because the required sample size is reached on the moment data saturation is achieved.789 For Delphi studies, it is advised to have a sample size of ten to twenty experts.10 It is important to select panel members who are experts in the field of interest. Filling in the questionnaires in three rounds will take time and requires a lot of attention for detail to carefully express the opinions. Therefore, we invited all GPs using TransHis for registration. TransHis is an EMR for use in the primary care setting. TransHis is developed for use in research. GPs using TransHis have to register different variables describing the patient-GP encounter. Therefore, GPs using TransHis are used to register a lot of information during patient contact and can be considered as experts for registration of patient information. We also invited all GPs participating in the Nijmegen Monitor Project (NMP). The NMP is a practicebased research network of the Radboud University Nijmegen. Despite this academic alliance, all participants do not differ from GPs who do not have a link with the academy. Selection of an initial set of personal factors A literature study was conducted to propose a first draft of a list of personal factors for initial use in our study. Geyh et al11 published a systematic review in 2011, which provides an overview of the literature regarding personal factors used in the ICF. Also the newsletter of the ICF12 which proposed a concept list of personal factors was used. Eventually, after confrontation and discussions on relevance for the general practice within our team, 60 factors were selected for our study. Most items found in the literature study were selected. Only items which could not be classified in one of the five main categories were not selected. Most of these unselected items were classified in the category of mental factors, a category which is not included in this study. Techniques and instruments First round: Using Limesurvey, we listed 60 factors in five main categories, which are ‘general personal data’ (9), ‘social context’ (8), ‘life events’ (15) ‘lifestyle factors’ (18) and ‘work related personal factors’ (10). Members of the expert panel were asked to evaluate each factor and if these factors should be registered for each adult patient (yes, no, sometimes) and to clarify the chosen answer. The questionnaire was introduced with a brief summary of the rationale of the study, and showed an example question. We emphasized the importance of the addition of a clarification of the chosen answer in our introduction. In this round, members of the expert panel were asked to contribute new items in each category. These items are valued in the next rounds by our expert panel. After all members of the expert panel completed the round 1 questionnaire, the results were analysed using SPSS by the research group. A cut-off point of 75% was used to include (≥ 75% ‘yes’) or exclude (≥ 75% ‘no’) items. All remaining items were used in the round 2 questionnaire. Included or excluded items were not re-examined in the following rounds.

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Second round: For each item, a summarized overview of the clarifications written by our members of the expert panel in the first round was provided. All clarifications, frequent and infrequent submitted, were displayed. Therefore all opinions of all members can be used as background information for evaluation of the items in the second round. Also, a frequency table with answers from round 1 (‘yes’, ‘no’, ‘sometimes’) was displayed. Using this information, members of the expert panel were again asked if each of the remaining and new items should be registered for every adult patient. During this round, only the answers ‘yes’ or ‘no’ could be selected. A clarification could be added for each item. After completion of the questionnaire by all members, we analysed the items using SPSS and used the 75% cut-off point to include or exclude items. Remaining items were used in the third round. In the second and third round, no new items could be proposed. Third round: The same strategy, used for the second round, was used to compose the final questionnaire. In this questionnaire, we also asked the characteristics of the GP and their practice. After completion of the questionnaire by all members of the expert panel, we analysed the answers of the last round using SPSS to include or exclude items, again using a cut-off point of 75%. For items for which no consensus was achieved, the clarifications submitted in each round were summarized and further described in the discussion section of this paper. Figure 1. Procedure for selection of items for the final list of personal factors. Red boxes describe activities performed by the study group, yellow boxes describe activities performed by the members of our expert panel.

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Results Selection of the members of the expert panel We have invited 28 GPs using the TransHis EMR system for our study. 19 GPs agreed to participate, others were not able to participate due to time restraints or other personal reasons. Our goal was to compose an expert panel of at least 20 members. Therefore, we also invited 26 GPs participating in the Nijmegen Monitor Project (NMP). 11 GPs of the NMP agreed to join our study, resulting in a total of 30 participants. The invitation for the first questionnaire was sent to 30 GPs. In 2,5 weeks, after sending up to two reminders for our study, the first questionnaire was completed by 26 GPs. For the second and third round, participants were asked to complete the questionnaire within 1,5 week for each round. A reminder was sent if the questionnaire was not completed in one week. Eventually, all 26 GPs completed the 3 rounds of our study. Table 3 (in the appendix) presents the characteristics of the 26 members of our expert panel. First round 26 of the invited 30 GPs completed the first questionnaire. A total of 652 clarifications were submitted, an average of 11 clarifications for each item. 25 new items were proposed. These new items were added to the round 2 questionnaire for evaluation by our expert panel. Using the 75% cut-off point, 15 items were included and 10 items were excluded for use in the definitive list. For the remainder 35 items, no consensus was achieved in round 1. These 35 items were again evaluated in the round 2 questionnaire. Second round All 26 members completed the second questionnaire. Using the 75% cut-off point, 4 items were included and 33 items were excluded. 498 clarifications were submitted, an average of 8 clarifications for each item. The remainder 23 items were used for our round 3 questionnaire. No new items were proposed in this round. Third and last round Again, all 26 members completed the third questionnaire. 1 item was included and 13 items were excluded. 178 clarifications were submitted, an average of 8 clarifications for each item. Consensus was not achieved for 9 items. The clarifications from the first, second and third round again were summarized and reviewed for these 9 items by the study group. The conclusions of this process are described in the discussion. A total of 20 items are included in our proposed list of personal factors. Figure 2 describes the process of the selection of items.

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Figure 2. Overview of number of items, included or excluded during each round. Red boxes describe activities performed by the study group, yellow boxes describe activities performed by the members of our expert panel.

Table 1: Final list of the included 20 personal factors. General personal data Social context Age Education Gender Occupation Country of birth Occupational status E-mail address Partnership and marriage Lifestyle factors Smoking Use of alcohol Use of drugs

Personal work related factors No items were included

Life events Death of a partner Death of a child Death of a loved one Pregnancy / birth of child Divorce Abuse in relation Abuse outside of relation Rape in relation Rape outside of relation

We hoped to achieve consensus for all items. Unfortunately, consensus was not achieved for 9 items, which are listed in table 2.

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Table 2: Items for which no consensus was achieved. The percentages show which part of the expert team answered ‘yes’ in every consecutive round. General Round 1 Round 2 Round 3 Life events Round 1 Round 2 Round 3 personal data Nationality 60% 69% 69% Other life event New 53% 53% item Genetic factors 61% 64% 50% Life event New 57% 57% experienced in item Illiteracy New 68% 65% childhood and item youth Open question* New 50% 47% item * Open question: Are there any other factors which can influence your health, and which would you like inform your GP?

Social context Current socioeconomic status Residence status

Round 1 58%

New item

Round 2 50%

Round 3 39%

50%

43%

Lifestyle factors Overweight

Round 1 New item

Round 2 47%

Round 3 27%

Discussion This study is a first step toward building a systematically list of personal factors which can be used in general practice. In this Delphi study we identified 20 personal items, which should be routinely registered for every adult patient in general practice according to the GP. All personal work related items were excluded from the final list. In the Netherlands, occupational health physicians are responsible for work related health. This is the most submitted reason for exclusion of all items in this category for registration in the general practice. The item ‘informal care, provided by family members, friends and neighbours’ is excluded from the final list. The members rated this item important for elderly patients, but not for every adult patient, therefore the item is excluded. The items ‘migration history’, ‘residence status’ and ‘war and disasters’ were also excluded from the list, but are suggested to register for specific patient groups, such as immigrants. It is remarkable that the members of the expert panel want to register the item ‘divorce’, but do not want to register the item ‘marriage’. It was suggested to create a subset of items for specific patient groups. The development of these subsets of items is rather complex, therefore more research on this subject is needed.

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We will discuss the nine left items separately: Nationality: After the first round, 60% of the members of the expert panel suggested that this item should be included. During round 2 and 3, 69% of the members voted ‘yes’. Given this high percentage and the clarifications, this item tends to be included in the final list. Some members contradict inclusion of this item because this item is not specific enough. There is too much diversity within one nationality. Because of the diversity, it does not give information about the cultural background of a patient. Another argument for exclusion is that the country of birth of mother and father can be more important to register. Genetic factors: All members clarified that genetic factors are important factors which can have a great impact on the patient. More and more is known about genetic factors and the relation with diseases. There is need for a decent registration system for genetic factors. Therefore, in the first round, 61% of the members suggested inclusion of this item in the final list. However, a few members expressed their concern for registration of these factors by the patient himself. The information should be objective and based on facts. If a patient himself provides this information, it could be inaccurate when inadequately asked. Therefore, the members suggested that the genetic factors should only be registered by the GP and not by the patient. In the second and third round other members revised their opinion. Eventually all members who submitted a clarification stated that a patient should not register this item himself, but the GP should be the one to register this factor. A few members suggested the use of a structured questionnaire with a predefined set of genetic factors. Illiteracy: In the Netherlands, illiteracy is a problem that concerns 1.1 million people aged between 16 and 65.13 This concerns 10% of the Dutch working population. This factor is added in round 1 as a new factor by one member of the expert panel. In round 2, other members valued this factor as important for registration. Illiteracy is important to know for the healthcare worker to provide patient centered care. It can be necessary to adjust the management of this patient, and to provide other ways of selfmanagement. Often, in the general practice, it is not known when a patient has difficulties reading and understanding the language. A few members supplied arguments for exclusion of this item. It is possible that patients will not be honest when answering this question, possibly out of shame. The question might embarrass the patient. Open question: The addition of this item was suggested by a member in the first round. He suggested to ask the following open question: Are there any other factors which can influence your health, and which you would like to inform your GP? Half of our expert panel would like to include this item. It creates a possibility for the patient to inform the GP of something special, which can provide surprising insights of the patient. For example, fear for needles could be submitted for registration. Another member clarified that this item was already present on their intake form. It often provides much usable information. Other members think this question may provide much useless information. It is better to discuss this item orally in the first consultation. Current socioeconomic status: After the first round, 58% of the members answered ‘yes’ for inclusion of this item. After the last round, only 39% of the members still answered ‘yes’. 12

The reason for this decrease is that it is unclear how to register this item correctly. What is the best method to ask a patient for their socioeconomic status? We already register profession, work status and educational degree. It is suggested to determine the socioeconomic status using these parameters. Other arguments to exclude this item are that registration of this item can be stigmatizing, and that the socioeconomic status can change during life. Members rate this item important, because it is a determinant for health, but the overall opinion is that this item cannot be registered by a patient himself, and can be determined using other parameters. Residence status: This new item is rated very important for patients with no residence status. It can cause stress and health problems. It is suggested by the members of the expert panel to register this item for patients with an abnormal residence status. Because this concerns only a small group of patients, this item is probably not suitable to register for every patient in the general practice. ‘Other life event’ & ‘Life event experienced in childhood and youth’: For both items, about half of the members of the panel suggested to include these items in the final list. They think these items can add usable information and it is a good thing to give the patient the possibility to provide this information. Other members think these items should be discussed in the first GP-patient encounter, and is not suitable to ask in a questionnaire. Overweight: This item was almost excluded from the list, with a score of 27% ‘yes’. Most members of the expert panel suggest that objective measurement of the length and weight is a better method to register possible overweight, using the BMI. Also, overweight should only be registered when a patient experiences his overweight as a care problem. The research group chooses the level of consensus to be employed. A universally agreed proportion does not exist for the Delphi survey, as the level used depends upon sample numbers and aim of the research. Studies describing guidelines for Delphi surveys suggests that consensus should be equated with 70%14 or 80%15 agreement amongst respondents. We used a cut-off point of 75% in all rounds. This cut-off point is used to decide which items will be included or excluded in the final list, and which items will be used in the following round. Using this cutoff point, consensus was not achieved for all items, 9 items are still left. However, the proportions of these 9 left items did not shift much during the three rounds. The opinions for including or excluding these items are too diverse, we believe consensus for these items will not be achieved in further rounds. After three rounds, we believe saturation of data was achieved. For a Delphi study, it is important to know when to stop: too soon will provide results that may not be meaningful, not soon enough may cause sample fatigue and may tax resources16. We think three rounds was enough to achieve our goal: achieve consensus for as many items as possible, but also accomplish a thoughtful final list of selected or newly added items.

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Strengths and limitations The use of participants who have knowledge and an interest in the topic may help to increase the content validity of the Delphi study5 and the use of successive rounds of the questionnaire helps to increase the concurrent validity. The members of the expert panel were selected for their interest in the subject of registration of patient factors. We assumed that they were motivated to evaluate all factors extensively and ponder over the addition of new items. We think that the members of the expert panel succeeded in this goal, because all 26 members completed all 3 rounds, and we received many clarifications for all items. A response rate of 70% is suggested by Sumsion14 for each round. To achieve this, the researcher must know the identity of respondents, and non-respondents must be pursued. Therefore, the pursuit of true anonymity presents problems. We aim to achieve ‘quasi-anonymity’: the respondents are known to the research team and even to one another, but their judgements and opinions remain strictly anonymous.17 After sending a maximum of two reminders to the member of the expert panel, eventually a response rate of 100% was achieved for all rounds. All clarifications were displayed for all items in the second and third round, also infrequently quoted clarifications. This is an important part of the Delphi study and adds strength to the results of the study. 4 To provide the answer ‘sometimes’ in round 1 was a mistake: the goal of this study was to achieve a list of factors which are usable to register for every patient. The answer ‘sometimes’ is not suitable for this goal. Providing the answer ‘sometimes’ in round 1, we expected to provoke different clarifications given by our members of the expert panel. Another flaw of this study was that new items could be proposed, but no explanation of this new item was asked. Some new items were not specific enough. For example, a definition of the new item ‘family circumstances’ was not provided by the creator. Members that valued this item in the following round remarked that the definition of this item was not clear enough and could be interpreted in different ways.

Recommendations for future projects The research group will explore solutions to integrate the final list of personal factors in the TransHis EMR system. This EMR system is used in several GP practices in the Netherlands. To implement this list of personal factors, other aspects should be explored. It is interesting to explore which factors are valued important by patients to register in the GP practice. A Delphi study could be conducted, using the same method as we did, only this time with a selection of patients as members of the expert panel. Combining the results of our study with the results of this new study, it is possible to create a balanced list of items both GP and patient value important. Also, a study could be conducted to explore how patients could be motivated to update the registered items. An app could be used on the smartphone or tablet for this purpose.

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Conflicts of interest statement We invited GPs to voluntarily participate in this study. No sensitive subjects were discussed, no mental or physical load was experienced by members of the expert panel. There was no need for use of medical files or body tissues. Therefore, it was not needed to have our study examined by the ‘Medische Ethische Commisie’. The collected data was safely stored and anonymously analysed. The data was only available for the members of the research group. There were no conflicts of interest. There is no personal gain for the members of the research group and the members of the expert panel in this study.

Reference list 1

Schers HJ, van den Hoogen HJM, van de Ven C. ‘Een Onderzoek Volgens de Delphi-Methode Naar Prioriteiten En Wensen Voor Ondersteuning Door Het Elektronisch Medisch Dossier.’ Huisarts Wet, 2001; 45(9): 371–76. 2 Weiner SJ, Schwartz A, Sharma G, Binns-Calvey A. ‘Patient-Centered Decision Making and Health Care Outcomes.’ Ann Intern Med 2013; 158: 573–79. 3 ICF International Classification of Functioning, Disability and Health, World Health Organisation, 2001 4 ‘Personal factors in the ICF: Dutch analysis and approach’ Heerkens Y, v Ravensberg D, Stallinga H, Post M, ten Napel H, de Kleijn–de Vrankrijker M. Dutch Institute of Allied Health Care; University Medical Centre Groningen; University Medical Centre Utrecht; Dutch WHO FIC Collaborating Centre 5 Hanson F., Keeney S., McKenna H. ‘Research guidelines for the Delphi survey technique’. Journal of Advanced Nursing, 2000; 32(4), 1008-1015 6 Goodman C.M. ‘The Delphi Technique: a critique’. Journal of Advanced Nursing, 1987; 12, 729-734. 7 P.L.B.J. Lucassen, T.C.Olde‐Hartman. ‘Kwalitatief onderzoek, praktische methoden voor de medische praktijk’ 1e druk. Houten: Bohn Stafleu van Loghum 2007. 8 Barbour RS. ‘Making sense of focus groups’. Med Educ, 2005; 39(7): 742‐50. 9 Kuper A, Lingard L, Levinson W. ‘Critically appraising qualitative research’. BMJ, 2008; 337: a1035. 10 Delbecq, A. L., Van de Ven, A. H., & Gustafson, D. H. ‘Group Techniques for Program Planning. Glenview, IL: Scott, Foresman, and Co,” 1975. 11 Geyh S, Peter C, Müller R, Bickenbach JE. ‘The Personal Factors of the International Classification of Functioning, Disability and Health in the literature - a systematic review and content analysis.’ Disability and Rehabilitation, 2011; 33(13-14): 1089–102. 12 WHO FIC Newsletter, volume 9, number 2, november 2011. 13 Houtkoop, W., Allen, J., Buisman, M., Fouarge, D. & Velden, R. van der. ‘Basisvaardigheden in Nederland: Resultaten van de Adult Literacy and Life Skills Survey.’ 2011 ’s-Hertogenbosch/Utrecht: Expertisecentrum Beroepsonderwijs 14 Sumsion T., ‘The Delphi technique: an adaptive research tool.’ Br J of Occ Ther, 1997, 61(4), 153-156. 15 Green B., Jones M., Hughes D., Willimas A. ‘Applying the Delphi technique in a study of GP’s information requirements.’ Health and Social Care in the Community, 1999; 7(3), 198-205. 16 Schmidt R.C. ‘Managing Delphi surveys using nonparametric statistical techniques.’ Decision Sciences, 1997; 28, 763-774. 17 McKenna H.P. ‘The Delphi technique: a worthwhile approach for nursing?’ Journal of Advanced Nursing, 1994; 19, 1221-1225 15

Appendices Appendix 1: Demographic characteristics of the members of the expert panel Appendix 2: Overview of included and excluded items for each category Appendix 3: Clarifications submitted for items with no consensus Appendix 4: Limesurvey questionnaire, round 1, 2 and 3

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Appendix 1: Demographic characteristics of the members of the expert panel Category Gender Age

Organisation of practice

Research practice Location of practice

Number of patients

Employees

Consultations by POH

Consultation with care workers

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Answers Male Female 30-40 40-50 50+ Solo practice Duo practice Group practice GPs under one roof (HOED) Health centre Yes Large city Small city Urbanized country Town <2000 2000-3000 >3000 Medical assistant Practice assistant (POH) Practice nurse (PVK) Cardiovascular risk management Diabetes Mellitus Asthma / COPD Care of the elderly Mental health (GGZ) Multidisciplinary consultation considering frail elderly Social welfare Mental health (GGZ) Physiotherapist Nursing home Pharmacy

% 46% 54% 39% 15% 46% 4% 4% 54% 30% 8% 100% 30% 12% 46% 8% 39% 42% 39% 100% 100% 48% 100% 100% 92% 76% 76% 56% 56% 52% 56% 24% 92%

Appendix 2: Overview of included and excluded items for each category Table 4.1: Overview of included and excluded items for category: General personal data

Table 4.2: Overview of included and excluded items for category: Social context

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Table 4.3: Overview of included and excluded items for category: Life events

Table 4.4: Overview of included and excluded items for category: Personal work related factors

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Table 4.5: Overview of included and excluded items for category: Lifestyle factors

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Appendix 3: Clarifications submitted for items with no consensus Nationaliteit (69% ja), ronde 1: 60% ja, ronde 2: 69% Ronde 1: Is patiënt hier tijdelijk met werkvergunning, vluchteling, of in afwachting van status? (3) Hoe om te gaan met dubbele nationaliteiten? (3) Belangrijk ivm kans op ziekten of gebreken (2) Speelt mogelijk een rol bij klachtenpresentatie en omgang met ziekten (2) Zegt weinig over cultuur en opvattingen van patient (2) Kan informatie geven over culturele achtergrond (2) I.v.m. mogelijke trauma's herkomst Er kan veel diversiteit binnen 1 nationaliteit zijn m.b.t. percepties over gezondheid en ziekte Om te weten of iemand in aanmerking komt voor bepaalde voorzieningen Ronde 2: Te veel diversiteit binnen 1 nationaliteit, nader specificeren nodig (2) Informatie over context van betrokkenen (2) Geboorteland (ook van vader en moeder) belangrijker (2) Bedacht zijn op traumatische ervaringen Welke voorzieningen en regelingen gelden voor patiënt, nodig bij verschillende administratieve formulieren We zijn geen toezichthouder Belangrijke factor voor onderzoek om in te vullen, ook al zegt het niets over verblijfstatus, mate van integratie of opvattingen Ronde 3: Land van afkomst relevanter (2) Geeft iets weer van de achtergrond van herkomst en subcultuur (2) Noodzakelijk om te weten als iemand van buiten Nederland komt i.v.m. verzekering of vergoedingsregeling. Voor patiënt ook belangrijk dat we daar interesse in hebben. Verplicht om bij nieuwe patiënten id te controleren Niet bij iedere patiënt noodzakelijk Persoon woont in Nederland, dus is Nederlands We zijn geen toezichthouder Als geboorteland vader en moeder niet opgenomen worden, dan zou ik nationaliteit wel willen weten

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Genetische eigenschappen (50% ja), ronde 1: 61% ja, ronde 2: 64% ja Ronde 1: Dit item toelichten in een vragenlijst, mogelijk weten patiënten niet goed wat dit betekent (6) Belangrijk item, steeds meer over bekend en kan consequenties hebben in preventieve acties (3) Wordt nu al vastgelegd in ICPC (risicofactor NAO) (3) Wordt steeds belangrijker, goede registratie nog niet aan orde geweest Dit item door arts laten vastleggen zodat het feitelijke informatie is Ronde 2: Door de arts zelf vastleggen in ICPC (4) Vastleggen van genetische gevolgen is een apart thema, moet anders uitgevraagd worden (4) Belangrijk voor onderzoek en a priori kans, wordt steeds belangrijker (3) Kan vertekende informatie geven wanneer patiënt het zelf invult (2) Ronde 3: Door arts laten invullen middels ICPC (6) Specifiek maken middels keuzemenu (2) Foutieve info als patiënt het niet goed invult Een patiënt minder van zijn genetische eigenschappen dan hij zelf denkt. Kan, indien bekend, een bepaald risicoprofiel opleveren, wordt steeds relevanter Open algemene vraag (47% ja) ronde 2: 50% Ronde 2: Erg breed, wordt een onoverzichtelijk allergaartje waar je niets mee kan (5) Geeft patiënt ruimte iets bijzonders te laten weten, kan verrassende inzichten geven (bijv. angst voor prikken) (3) Goed idee, weet niet wat het gaat opleveren, maar zou je een tijdje experimenteel aanwezig kunnen laten (2) Ronde 3: In intakegesprek aan bod laten komen, niet duidelijk voor patiënt wat in te vullen (2) Te diverse antwoorden, te breed, patiënteninfo niet te categoriseren (3) Expirimenteel mee nemen (2) Bij inschrijving wordt deze vraag in onze praktijk al gesteld, levert vaak veel op! Open vragen kunnen verrassende antwoorden geven (4) Voordeel lijkt me groter dan het nadeel

22

Analfabetisme (65% ja), ronde 2: 68% ja Ronde 2: Weten we vaak niet, kan misverstanden voorkomen (4) Analfabeet zelf laten invullen dan hij analfabeet is doet je wenkbrauwen fronsen (3) Belangrijk voor gezondheid en communicatie met de hulpverlener, LHV beveelt dit ook aan alsmede gezondheidsraad (3) Grote impact op management patiënt inclusief zelf management (2) Zal niet door iedereen eerlijk beantwoord worden (2) Niet relevant Ronde 3: Onbekend hoe dit goed uit te vragen (3) Niet door patiënt laten invullen, maar zelf eventueel opmerking plaatsen Vragen naar: aantal jaren school Kan gênant zijn voor patiënt Belangrijk, patiënt eventueel hulp bieden bij invullen van de lijst Geeft richting voor informatievoorziening Huidige SES (39% ja) ronde 1: 58% ja, ronde 2: 50% ja Ronde 1: SES kan prognose en andere outcome parameters bepalen en iets zeggen over gezondheid (4) Registratie is moeilijk door de patiënt in te vullen (3) Kan stigmatiserend zijn (3) Wie bepaalt de hoogte van aanzien en prestige (3) SES kan veranderen gedurende het leven, maar vaak niet veel (3) Zelf af te leiden uit beroep, opleiding en evt adres (2) Voor onderzoek belangrijk (2) Ronde 2: Uit beroep af te leiden (3) Aan variaties onderhevig (3) Stigmatiserend (2) Belangrijke vraag voor onderzoek, wordt gezien als voorspeller voor ziekte / gezondheid (2) Niet vragen naar SES, maar operationaliseren naar feitelijke omstandigheden zoals baan / uitkering /opleidingsniveau (2) Ronde 3: Hoe te operationaliseren? (3) Geoperationaliseerd naar opleiding, beroep, evt uitkering (4)

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Verblijfstatus (43% ja), ronde 2: 50% ja Ronde 2: Alleen indien van toepassing, voor overgrote deel van onze populatie niet van toepassing (8) Heeft grote invloed op welzijn, gezondheid, kan spanningen geven, heeft grote impact (4) Dit gegeven is persoonlijk Verzekeringstechnisch van belang Ronde 3: Indien van toepassing (nationaliteit niet NL) (5) Grote impact op iemands welzijn Relevant als deze niet normaal is, maar mogen we dit juridisch gezien wel vastleggen? Komt zonodig in het consult aan de orde Ander life-event (53% ja), ronde 2: 53% ja Ronde 2: Goed om patiënt ruimte te geven extra informatie te kunnen geven (6) Als er dingen zijn die een patient zo belangrijk vindt dat hij de moeite neemt om het op te schrijven is het kennelijk relevant en wil ik het weten. (2) Bij intake vragen naar bijzondere of ingrijpende gebeurtenissen Ronde 3: Kan relevante informatie geven (4) Kan ook in kennismakingsgesprek gevraagd worden, kan zo nodig door HA vastgelegd worden (2) Kan al ingevuld worden bij open vraag (2) Life event in jeugd (57% ja), ronde 2: 57% ja Ronde 2: Overlap eerdere items (3) Goed item, maar belangrijk dat de vraag goed geformuleerd wordt en toelichting gegeven wordt dat deze gebeurtenissen ook in het latere leven van invloed kunnen zijn (2) Is niet altijd relevant bij volwassenen (2) Alleen bij intake, vragen naar bijzondere of ingrijpende gebeurtenissen Goed item, ik vraag tijdens kennismaking altijd naar scheiding ouders en naar ziekten ouders in het kader van erfelijkheid en psycho sociale impact Ronde 3: Goed om eenmalig neutraal naar te vragen Mits goed gevraagd - kan juist helpen om erover te praten Komt bij andere items aan de orde Life events in jeugd kunnen jaren later weer actueel worden

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Overgewicht (27% ja), ronde 2: 47% ja Ronde 2: Zelf lengte en gewicht meten (6) Vragen naar lengte en gewicht, overgewicht is voor iedereen wat anders (3) eigenlijk zou op het moment dat een gewicht en lengte wordt ingevuld in het meetwaardenscherm en de BMI blijkt te hoog er automatisch een vraag van het HIS moeten komen: wilt u een episode overgewicht aanmaken? Dan zou dit item getackeld zijn. Want het is wel handig om het terug te zien in je probleemlijst. Ik ben gewend om bij iedere patient bij wie dit medisch relevant is dwz gezien de RfE of de comorbiditeit, of wanneer pat er zelf mee komt, T82 of T83 te registreren. Het zou mooi zijn als we hier een zekere consensus over bereikten. Ronde 3: Niet als vragenlijst vraag (3) Lengte en gewicht vragen (2) Zelf meten en wegen Eventueel noteren als ICPC of episode

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Appendix 4: Limesurvey questionnaire, round 1, 2 and 3 In this appendix, we will display the text used in Limesurvey for our questionnaire in three rounds. For printing issues, a full copy of the questionnaire is not included. A full copy of the questionnaire is digital available, you can send an e-mail to [email protected] for a full digital copy.

Round 1: Registratie van achtergrondfactoren bij volwassen patiënten in de huisartsenpraktijk: ronde 1 Achtergrond bij ons onderzoek: In de huisartsgeneeskunde spelen persoonlijke eigenschappen en omstandigheden van de patiënt een belangrijke rol in het dagelijkse patiëntencontact. Tijdens het gesprek met de patiënt houdt iedere huisarts bewust en onbewust rekening met deze achtergrondfactoren. Ook bij het stellen van een diagnose en het opstellen van een behandelplan kunnen achtergrondfactoren meespelen. Met dit onderzoek willen we een eerste opzet maken van een lijst met achtergrondfactoren, die geschikt is om bij iedere patiënt in de huisartsenpraktijk te registreren. We richten ons in dit onderzoek op de achtergrondfactoren in de volgende categorieën: Algemene persoonsgegevens, sociale context, life events, leefstijlfactoren en werk gerelateerde persoonlijke factoren. Andere factoren, zoals coping, attributie en therapietrouw, vallen buiten het onderzoek. Het is de bedoeling dat de patiënt zo mogelijk zelf, door middel van bijvoorbeeld een app op de smartphone of tablet, de lijst van persoonlijke factoren invult en actualiseert. Er zijn 65 vragen in deze enquête.

Uitleg van de vragenlijst: De vragenlijst is op de volgende manier opgebouwd: Per categorie (totaal 5 categorieën) hebben we een aantal factoren benoemd, die uit de literatuur zijn verkregen. Het is de bedoeling dat je per factor aangeeft of je van mening bent dat deze factor bij iedere volwassen patiënt geregistreerd moet worden, door middel van ‘ja’, ‘nee’ of ‘soms’.

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Daarnaast willen we je vragen of je per factor een toelichting kunt geven. Deze toelichting is erg belangrijk voor ons onderzoek. Met de verzamelde toelichtingen kunnen we jullie, nadat de vragenlijst door iedereen is ingevuld, op de hoogte brengen van meningen van andere deelnemers van het onderzoek middels een (anonieme) terugkoppeling. De inhoud van deze terugkoppeling kun je gebruiken bij het invullen van de vragenlijst in de volgende ronde. Bij de toelichting kun je onder andere vermelden waarom je een bepaalde factor wel of niet wil registreren en wat je als mogelijk belemmerende factoren ziet bij de registratie van deze factor. We willen daarom vragen om extra aandacht te schenken aan het invullen van deze toelichting! Soms kan een term van een factor niet duidelijk zijn. We hebben daarom bij een aantal factoren extra uitleg of een voorbeeld toegevoegd. Deze uitleg staat dan onder de antwoordopties, bij het icoontje met het vraagteken, vermeld. Mogelijk zijn er extra factoren die niet in de lijst staan, maar die je wel belangrijk vindt voor registratie. Per categorie is het mogelijk om factoren toe te voegen, die dan meegenomen worden in de volgende ronde van het onderzoek. Voorbeeldvraag:

27


Uitleg van de tweede ronde: Er zijn 35 van de 60 items meegenomen naar deze ronde, waarbij niet genoeg consensus is bereikt in de eerste ronde. De overige 25 items worden naar aanleiding van de gegeven antwoorden in de vorige ronde wel of niet opgenomen in de uiteindelijke lijst. Deze items worden ter informatie bij iedere categorie vermeld, boven aan de pagina. Er zijn 25 nieuwe items door jullie aangedragen in de vorige ronde, die we in deze ronde ook meenemen. We willen jullie in deze ronde vragen om per item met 'ja' of 'nee' aan te geven of dit item aan iedere volwassen patiënt gevraagd moet worden. Gezien onze vraagstelling is de antwoordkeuze 'soms' niet meer mogelijk om te kiezen. Het doel van het onderzoek is om een lijst op te stellen die geschikt is voor iedere volwassen patiënt. Daarnaast is het mogelijk om wederom per item een toelichting te geven.

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Per item zijn de genoemde toelichtingen uit de vorige ronde vermeld. Een getal tussen haakjes geeft aan hoeveel van de 24 deelgenomen huisartsen deze toelichting hebben gegeven. Ook zijn de percentages van de antwoorden uit de vorige ronde weergegeven in een tabel. Mogelijk geven de toelichtingen van andere huisartsen en tabellen andere inzichten en gedachten die kunnen helpen bij het beantwoorden van de vraag: Moet deze factor bij iedere volwassen patiënt geregistreerd worden? Het is de bedoeling dat de patiënt de informatie zelf invult, bijvoorbeeld middels een app op de smartphone of tablet. We willen jullie vragen om per item aan te geven of deze aan de patiënt gevraagd dient te worden. Uit de toelichtingen is gebleken dat het bij een aantal items niet duidelijk is hoe dit item gevraagd of geoperationaliseerd kan worden. Er zal voor een aantal items verder onderzoek nodig zijn hoe dit door de patiënt zelf geregistreerd kan worden. Dat is een vervolgstap dat buiten de vraagstelling van ons onderzoek valt. In de vorige ronde zijn de items 'leeftijd' en 'geslacht' geselecteerd om opgenomen te worden in de uiteindelijke lijst. Over onderstaande items is in de categorie 'algemene persoonsgegevens' nog geen concensus bereikt: Item 1: Nationaliteit Toelichtingen vanuit de vorige ronde:

Is patiënt hier tijdelijk met werkvergunning, vluchteling, of in afwachting van status? (3) Inzicht in dubbele nationaliteiten (3) Belangrijk ivm kans op ziekten of gebreken (2) Speelt mogelijk een rol bij klachtenpresentatie en omgang met ziekten (2) Zegt weinig over cultuur en opvattingen van patient (2) Kan informatie geven over culturele achtergrond (2) In verband met mogelijke trauma's herkomst (1) Er kan veel diversiteit binnen 1 nationaliteit zijn met betrekking tot percepties over gezondheid en ziekte (1) Om te weten of iemand in aanmerking komt voor bepaalde voorzieningen (1) Percentages van antwoorden van de vorige ronde:

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Moet de factor 'nationaliteit' bij iedere volwassen patiënt geregistreerd worden?

30


Uitleg van de derde ronde: Er zijn 23 van de 60 items meegenomen naar deze ronde, waarbij niet genoeg consensus is bereikt in de tweede ronde. De overige 37 items worden naar aanleiding van de gegeven antwoorden in de vorige ronde wel of niet opgenomen in de uiteindelijke lijst. Deze items worden ter informatie bij iedere categorie vermeld, boven aan de pagina. We willen jullie in deze ronde wederom vragen om per item met 'ja' of 'nee' aan te geven of dit item aan iedere volwassen patiënt gevraagd moet worden. Het doel van het onderzoek is om een lijst op te stellen die geschikt is voor iedere volwassen patiënt. Uit de toelichtingen blijkt dat jullie een aantal items voor een bepaalde patiëntengroep geschikt vinden. Mocht je

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een vraag niet geschikt vinden voor iedere patiënt, dan raden we aan om 'nee' in te vullen. Het is ook mogelijk om wederom per item een toelichting te geven. Per item zijn de genoemde toelichtingen uit de vorige ronde vermeld. Een getal tussen haakjes geeft aan hoeveel van de 26 deelgenomen huisartsen deze toelichting hebben gegeven. Ook zijn de percentages van de antwoorden uit de vorige ronde weergegeven in een tabel. Mogelijk geven de toelichtingen van andere huisartsen en tabellen andere inzichten en gedachten die kunnen helpen bij het beantwoorden van de vraag: Moet deze factor bij iedere volwassen patiënt geregistreerd worden? Het is de bedoeling dat de patiënt de informatie zelf invult, bijvoorbeeld middels een app op de smartphone of tablet, waar nodig (bij analfabetisme of bij het niet kunnen lezen / schrijven van de Nederlandse taal) met hulp van bijvoorbeeld de doktersassistente. We willen jullie vragen om per item aan te geven of deze aan de patiënt gevraagd dient te worden. Uit de toelichtingen is gebleken dat het bij een aantal items niet duidelijk is hoe dit item gevraagd of geoperationaliseerd kan worden. Er zal voor een aantal items verder onderzoek nodig zijn hoe dit door de patiënt zelf geregistreerd kan worden. Dat is een vervolgstap dat buiten de vraagstelling van het huidige onderzoek valt. Op de laatste pagina van de vragenlijst willen we je vragen om nog een aantal gegevens van jezelf en van de huisartsenpraktijk waar je werkzaam bent in te vullen. In de vorige ronde zijn de items 'geboorteland' en 'e-mail adres' geselecteerd om opgenomen te worden in de uiteindelijke lijst. De items 'moedertaal', 'Nederlandse taalbeheersing', 'bevolkingsgroep', 'geboorteland vader en moeder', 'sexuele geaardheid' en 'beschikbaarheid over internet' zullen niet in de definitieve lijst opgenomen worden. Over onderstaande items, binnen de categorie 'algemene persoonsgegevens', is nog geen concensus bereikt:

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Item 1: Nationaliteit Toelichtingen vanuit de vorige ronde:

Te veel diversiteit binnen 1 nationaliteit, nader specificeren nodig (2) Informatie over context van betrokkenen (2) Geboorteland (ook van vader en moeder) belangrijker (2) Bedacht zijn op traumatische ervaringen Welke voorzieningen en regelingen gelden voor patiënt, nodig bij verschillende administratieve formulieren We zijn geen toezichthouder Belangrijke factor voor onderzoek om in te vullen, ook al zegt het niets over verblijfstatus, mate van integratie of opvattingen Percentages van antwoorden van de vorige ronde:

Moet de factor 'nationaliteit' bij iedere volwassen patiënt geregistreerd worden?

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Tot slot willen we je vragen om een aantal gegevens over jezelf en de huisartsenpraktijk waar je werkzaam bent in te vullen: *Geslacht

Kies een van de volgende antwoorden



Man



Vrouw

*Leeftijd

Antwoord In dit veld kunnen alleen cijfers worden ingevoerd *Praktijkvorm Kies een van de volgende antwoorden



Solo



Duo



Groepspraktijk



HOED



Apotheekhoudend



Andere:

*Praktijklocatie Kies een van de volgende antwoorden



Dorp



Verstedelijkt platteland



Kleine stad



Grote stad



Andere:

34

*Werkuren (persoonlijk aantal FTE)

Antwoord In dit veld kunnen alleen cijfers worden ingevoerd *Praktijkomvang Kies een van de volgende antwoorden



< 2000



2000 - 3000



> 3000

*Medewerkers Selecteer de toepasselijke opties



Doktersassistente



POH



Praktijk verpleegkundige



Andere:

Spreekuren POH Selecteer de toepasselijke opties



Diabetes Mellitus



Astma / COPD



Ouderenzorg



GGZ



Andere:

Overleg Selecteer de toepasselijke opties

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

MDO



MDO (kwetsbare ouderen)



Maatschappelijk werk



GGZ



Fysiotherapie



Verzorgingshuis



Apotheek



Andere:

36

Registration of personal factors of patients in the general practice: which are important to register according to general practitioners?

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