October 24, 2021

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Patients with rheumatoid arthritis facing medical treatment

Introduction

In rheumatoid arthritis care, patients and healthcare professionals (HCP) regularly face health treatment decisions. This is due inter alia to the high number of pharmacological and non-pharmacological treatment options, the lack of clear recommendations for specific treatments, the chronic character of the disease demanding long-term care, and multi-morbidity requiring care and coordination of care by several HCPs.1 In recent years, shared decision making between HCPs and patients when facing a health treatment decision has gained ground in rheumatoid arthritis care. In shared decision-making, HCPs and patients share the best available evidence when faced with the task of making health treatment decisions – the “team talk”. This “team talk” includes an explanation on the patient’ health status, the possible treatment goals, the health treatment decision, the process of shared decision making and the roles of the HCP and patient in the shared decision making process. After the “team talk”, the HCP assists the patient in considering the treatment options and their possible benefits and harms – the “option talk”. In this stage the HCP and the patient elicit the patient’ values regarding the treatment options so that the patient can form informed preferences. The final decision depends on how the patient values the outcomes of the options– the “decision talk”.2,3 Shared decision-making is therefore an iterative approach and ensures that health decisions reflect patient values and preferences.3 Sorting out what matters to a patient as relevant to a specific health treatment decision is an essential part of shared decision making and is known as “value clarification”.4 In general, the theory of shared decision-making does not make a rigid demarcation between patient values and patient preferences.5 According to Froberg and Kane,6 patient preferences show the emphasis patients place on disease-related outcomes and include aspects of health, health care and other aspects that are important for the quality of life. Values refer to personal beliefs, desires and expectations of what is right or wrong. Value clarification is generally defined as the process of identifying what matters most to a patient when considering a given health treatment decision.4 This process is not easy to perform. Patient may experience challenges in clarifying their values and preferences as these are not only health or care related, but also concerns personal life, such as daily activities, family and friends, finances, culture. Specific communicative efforts between HCPs and patients are needed in this regard, such as acting collaboratively, respecting autonomy and having an empathic approach.7 Halgraves et al8 argue that conversations are needed in which the patient and the HCP can think, talk and feel their way through which option makes intellectual, practical and emotional sense for each individual patient. In addition, a decision aid could facilitate the communication on patient values within the process of shared decision-making.9 Several value clarification methods within decision aids are available to help patients think about the desirability of options or attributes of options within a specific decision context, in order to identify which option they prefer.9 Recent studies of shared decision-making and value clarification in rheumatoid arthritis care have underlined their added value for health outcomes – ie disease activity, pain and joint damage.10–12 Nevertheless, it is suggested that more attention should be paid to patient values regarding health treatment decisions during consultations.13 To assist patients and HCPs with value clarification in daily practice of rheumatoid arthritis care, a generic decision aid on value clarification for a diversity of health treatment decisions might be beneficial.14 As a first step to the development of such an decision aid, we explored patients’ main values regarding important health treatment decisions within rheumatoid arthritis care. Our aim is to provide a first overview of “values that do matter to” patients with rheumatoid arthritis when facing health treatment decisions. Bertha Maat, Theo Foekens, and Gerardine Willemsen-de Mey are patient authors in this study.

Methods

Aim of the Study

This study aimed to identify patient values for important health treatment decisions in rheumatoid arthritis care. Specific research questions were what major decisions within rheumatoid arthritis care do patients face and, regarding these health treatment decisions, what are the patients’ main values?

Study Design

Our study was carried out among patients with rheumatoid arthritis. We used a mixed-methods sequential exploratory design to obtain a clear picture of important values concerning major health treatment decisions. Semi-structured in-depth interviews for exploring values concerning past health treatment decisions were followed by an online survey to validate the overview of values for future health treatment decisions among the broader population of patients with rheumatoid arthritis. For reporting our study, we used the consolidated criteria for reporting qualitative research and the Standards for Reporting Qualitative Research.15,16

Study Population

Patient partners with rheumatoid arthritis of the National Association ReumaZorg Nederland (RZN), the commissioning organisation of this study, were chosen as the population for the qualitative part. These patient partners are trained to give a voice to all patients with rheumatoid arthritis instead of their personal experiences with rheumatoid arthritis (and its care) only, therefore able to present a wider view. Inclusion criteria for the patient partners were “being diagnosed with rheumatoid arthritis” and “having faced a health treatment decision in the past two months”. A period of two months was chosen in order to minimise recall bias for the in-depth interviews. For the quantitative online survey of values regarding future health treatment decisions, we aimed to get the widest possible representation of patients with rheumatoid arthritis. The only inclusion criterion for this survey via Facebook and the RZN website was therefore “being diagnosed with rheumatoid arthritis”.

Data Collection

For the in-depth interviews, an invitation e-mail was sent by RZN to its 25 patient partners with rheumatoid arthritis at the end of March 2020. The e-mail addressed the aim of the study, the interview topics, the method of interview and its duration. Interviews with respondents were scheduled between 25 March and 6 April. In preparation for the interview, the ten respondents were asked to recall the health treatment decisions they had faced in the previous months and what “mattered to them” concerning these health treatment decisions. Data saturation was reached after ten interviews and recruitment of participants therefore ended at ten respondents. Because of the COVID-19 pandemic, all interviews were conducted via online video calls (Skype/WhatsApp). The interviews were held by one researcher (LC); a second researcher (HV) provided feedback on the interview process after the first and the fifth interviews. The interview guide addressed personal information, the impact of rheumatoid arthritis on daily life, decisions in rheumatoid care and values. Audio recordings were made with the permission of the interviewees, and informed consent was obtained. The interviews lasted 45 minutes on average. Following the in-depth interviews, an online survey was conducted between 18 May and 2 June 2020. The invitation for the online survey was distributed among members of RZN and published on the RZN’s website and Facebook. In addition, snowball sampling was used as participants were asked to forward the survey to other patients. A response of 126 participants was achieved. The online survey questionnaire, in Dutch language, addressed personal information and the general experience with facing specific decisions within rheumatoid arthritis care. In addition, it contained value statements on patient values regarding health treatment decisions in rheumatoid arthritis. These value statements were derived from a qualitative analysis of the in-depth interviews. The value statements were formulated by two authors (LC, HV) and cross-checked by one patient partner and two other authors (PP, GW). Participants could validate the value statements by stating how much they thought it was “an important value when facing one of the 17 health treatment decision regarding rheumatic care”. For this purpose, a five-point scale of response categories (ranging from entirely unimportant to highly important) was used. The survey was developed using Qualtrics and took patients 20 minutes on average to fill in.

Data Analysis

Qualitative content analysis was applied to the transcripts using ATLAS.ti 8. First, three transcripts were coded by two researchers (LC, HV) to form an initial shared understanding and perspective on health treatment decisions and patient’s values. The remainder of the interviews were then coded for values by one researcher (LC), with reliability checks performed by the other researcher (HV). This process yielded initial salient values. Second, to grasp the complexity and volume of identified values, the model of Armstrong and Mullins17 was used to categorise the values into four domains. These four value domains are 1) decisional values, ie, the pros and cons of options; 2) situational values, ie, the impact of daily life; 3) external values, ie, the impact of others; and 4) global values, ie, the personal belief system. For all formulated value statements, underlying quotes are reported. In addition, descriptive analyses of the online survey data were made with SPSS 25.0.

Results

Study Population

The majority of study participants of both the semi-structured interviews (“I”, n=10) and the online survey (“S”, n=126) consisted of women (I=70%, S=90%). In both study groups, most respondents were aged 45–64 (I=80%, S=60%), half were diagnosed with rheumatoid arthritis at least 10 years ago (I=70%, S=49%), many experienced a high burden of rheumatoid arthritis in daily life (I=70%, S=54%), lived with a partner (I=50%, S=40%). Finally, 70% stated that they had one or more comorbid conditions (I=70%, S=74%) (Table 1).

Table 1 Study Population Within the Two Methods of Data Collection

Health Treatment Decisions

Patients face a diversity of health treatment decisions in rheumatoid arthritis care. The majority of participants in the online survey had to decide about starting the use of medication (S=62%), starting physical therapy (S=49%) or changing their medication (S=44%). Other treatment decisions included pain treatment (S=39%), decisions about the administration route for their medication (36%) and adding or reducing medication (S=35–32%). Less frequently mentioned were the treatment decisions about surgery of the joints (S=19%), decisions about health services (S=19%) or the care pathway (S=12%) and lifestyle coaching (S=8%) (Table 2).

Table 2 Treatment Decisions in Rheumatoid Arthritis Care Faced by Patients

Values

Decisional Values – Pros and Cons of Options

For the majority of patients, the effectiveness of treatment is an important value in the process of making future health treatment decisions (Table 3). In particular, outcomes on inflammation, functioning, pain and fatigue were reported by patients. “I would like to keep the risk as low as possible and avoid developing all kinds of things in the course of time” [Interviewee 2, female, age 64, RA for 35 years]. Patients also prefer to avoid treatments with a risk of side effects. Another finding was the patient value emphasising a healthy lifestyle and keeping up their physical fitness. A healthy lifestyle was also preferred over using medication as treatment for rheumatoid arthritis.

Lifestyle changes work better than those medicines. If you weigh a hundred kilos and you’ve got joint pain, you can use as much prednisone as you want but it won’t help a fat lot. [Interviewee 4, female, age 70, RA for 24 years]

Finally, in order to make future treatment decisions, one prerequisite for patients turned out to be having an overview of their health status – what are patient’ needs and treatment goals – and of possible effects on RA and the risk on side effects of each treatment option.

Situational Values – Impact of Daily Life

Staying independent and being able to keep meeting friends and family were described by patients as important situational values for future health treatment decision-making (Table 3). One of the interviewees stated,

Mobility matters a lot because I think it’s important that I can still get to places. Otherwise I’m really just stuck between four walls and that will drive me round the bend in the longer term. [Interviewee 2, female, age 64, RA for 35 years]

This also included the desire to continue a normal life, for example keeping up hobbies and playing sports as much as possible. “I am not the disease …. I don’t listen to the restrictions about what I can and can’t do. I never do that. I don’t put limits on myself.” [Interviewee 5, male, age 60, RA for 18 years]. For those patients with a job, values concerning their work also showed up as the following quotes illustrate: “Well, I’m the breadwinner at home, so my job is important” [Interviewee 1, female, age 58, RA for 18 years]. “It’s nice that I now have to have this prosthesis, but how will that then affect my work?” [Interviewee 1, female, age 58, RA for 18 years]. “Back when I was working, I wanted my own business … you don’t want to endanger that because you are not able to work to too often, for whatever reason.” [Interviewee 3, female, age 60, RA for 32 years]. These quotes show how financial and practical considerations regarding job stability are important for some of the patients.

External Values – Impact of/on Others

The healthcare professional (HCP) turned out to have an important impact on patients for future health treatment decision-making (Table 3). First of all, as most patients with rheumatoid arthritis have multiple health problems, patients need an HCP who can help them with overall healthcare delivery. A female interviewee aged 58 who has had RA for 18 years [Interviewee 1] explained:

Specialists only look at what they themselves specialise in. As a patient, you have to keep thinking carefully about what is the smart thing to do and what isn’t. That’s really difficult, because you don’t have the knowledge.

Furthermore, patients stated they need an HCP who has time for them, who can be contacted easily and who takes them seriously in the choice of treatment. One interviewee, for example, complained:

It’s about being able to have a say in the decision. Although my HCP said ‘it’s fine that you’re choosing that’, she doesn’t take it seriously; the only things she takes seriously are what have been proved scientifically. [Interviewee 7, male, age 54, RA for 7 years]

In addition to this, patients take into account the burden they might put on the family or the household. “Because you’re so knackered, you don’t always react very politely during the day. You may be on a shorter fuse or simply unable to do some activities” [Interviewee 2, female, age 64, RA for 35 years]. According to patients, future health treatment will be influenced by HCPs, friends and relatives but the majority of patients need to be certain about their own choice for treatment.

Global Values – Personal Belief System

“Autonomy” was expressed as a global value (Table 3). This included being able to make your own decisions, being responsible for your own life and getting around independently. Interviewee 2 [female, age 64, RA for 35 years] explained it as follows:

It’s about being able to function independently yourself. Simply being able to ride your bike and do your own shopping – things like that. Simply the normal, everyday things.

In addition, the “self-image” was mentioned by patients as being a value for future health treatment decisions. Self-image is related to wanting to look good and well cared for, to be seen as capable of doing the job, not wanting to feel old or to be seen as disabled. Other global values stated were “social participation, such as feeling useful” and “intimacy and sexuality”. As such, global values include the life priorities and beliefs that colour daily life, including the choices within rheumatoid arthritis care.

Discussion

This study aimed to investigate patients’ main values regarding important health treatment decisions in rheumatoid arthritis care. As patients and healthcare professionals face health treatment decisions regularly, we first investigated what major choices patients with rheumatoid arthritis do face regarding health care.

In addition, we explored patients’ main values regarding these important decisions. To our knowledge, this is the first study that gives an overview of main values regarding multiple treatment decisions in rheumatoid arthritis care. This overview of “values that do matter to” patients with rheumatoid arthritis when facing health treatment decisions is a first step to facilitate collaborative deliberation on important healthcare issues. This may be done by using the list of value statements in the consultation room when a healthcare professional and a patient are involved in a shared decision-making concerning a certain health treatment decision.

Our analysis identified a variety of values that patients do take into consideration when facing a health treatment decision within rheumatoid arthritis care. Consistently with the literature,10–12,18,19,21 effectiveness of treatment (on inflammation, functioning, pain and fatigue) and avoiding negative side effects were stated as being very important when choosing a treatment option. Important situational values turned out to be staying independent; being able to meet friends and having a normal life. The decisional values coincide with the patient outcomes formulated in the standard set of outcome measures for inflammatory arthritis, including rheumatoid arthritis, by the International Consortium for Health Outcome Measurement (ICHOM).18 ICHOM collaborates with patients and healthcare professionals to define and measure patient-reported outcomes to improve the quality and value of health care A way to meet this goal of personalised care is to include patients’ values in the decision‐making process.20 Other studies also emphasised the importance of situational values.19,21 Including existential dimensions of physical need, identity, social belonging and meaning in healthcare communication is of utmost importance for patients facing treatment decisions in long-term care.19,21 Furthermore, existing evidence supports our findings that patients prefer healthcare professionals who a) take comorbidity into account, b) have enough time for the consultation, and c) take the patient seriously in their choice of treatment.22,23 Patients valued a shared approach to decision-making for choosing the right treatment option and emphasised the importance of enhanced communication with healthcare professionals.24 Finally, global values were expressed, such as autonomy, self-image and intimacy.25,26

Our study provides valuable insights into patients’ values for health treatment decisions within rheumatoid arthritis care. Some of these values are included in well-known standardised questionnaires on the outcome of rheumatoid arthritis care, the so-called patient-reported outcome measures. These values could be regarded as population-based values. Nevertheless, in the clinical encounter, it is crucial that discussions with patients include an assessment of which treatments are most likely to support their needs, goals, and preferences, and that information that could affect their treatment decision-making be provided as transparently as possible.1 As the values of patients are highly individualised, subjective and changeable over time, patients should continuously be asked to express their personal values for a specific treatment decision and treatment option.1,22 To assist patients and HCPs with value clarification in daily practice of rheumatoid arthritis care, a generic decision aid on value clarification for a diversity of health treatment decisions might be beneficial.15 No such a value clarification tool for rheumatoid arthritis care exists currently in the Netherlands or internationally. A value clarification tool could help patients evaluate the desirability of options or attributes of options within a specific decision context, in order to identify which option they prefer.27,28 Value clarification tools are mostly digital tools with presentation of values in graphs and with links and hyperlinks to additional resources, adjusted for low-literacy patients.29–31 Several elicitation methods for values and preferences do exist, comprising matching methods, discrete choice experiments, multi-criteria decision analysis and other rating and ranking methods.11 Further research is needed to find out what elicitation method for this tool would fit the best for the generic value tool for patients with rheumatoid arthritis.

Limitations

The results of our investigation should be interpreted in the context of its limitations. At first, a note should be made of the study population and external validity of our study results. Our study population is representative of the Dutch population of patients with rheumatoid arthritis in terms of age, sex and co-morbidity.32–34 Nevertheless, participants in our study may not reflect the views of patients of minority groups (migrants, low socioeconomic status) and it is therefore possible that we may have missed some values. Furthermore, no pregnant women were involved in our study, and no values on pregnancy or the desire to become pregnant and the use of rheumatoid arthritis drug were formulated, although other studies have shown its relevance.1 Additionally, the majority of our population had been diagnosed with rheumatoid arthritis for several years and only a few young adults participated in it. This may have had an impact on values about treatment options. Future studies of the values for important rheumatoid arthritis treatment options should therefore apply the optimum variation sampling strategy in order to obtain a diversity of patient perspectives. Second, the internal validity of our qualitative study could be low as only experienced patient partners of RZN were included in the semi-structured interviews. Even so, semi-structured interviews turned out to be an appropriate tool for this study because they gave the opportunity to explore and gain more in-depth insights into values before the large-scale survey among other patients was designed.35 Semi-structured interviews allowed for two-way communication. This was useful for discovering values of interviewees that they were unaware of and gave the interviewer the opportunity to ask for elaborations.

Conclusion

In rheumatoid arthritis care, patients and healthcare professionals regularly face health treatment decisions. According to patients, 17 important health treatment decisions in rheumatoid arthritis care can occur. The most commonly reported treatment decisions concern the use of medication. A variety of preferences and values could guide patients’ health treatment decisions. We found 66 values among four domains of values – decisional, situational, external or global. Patients and professionals should therefore elicit values continuously to improve therapy compliance, quality of care and quality of life.

Summary

In rheumatoid arthritis care, patients and healthcare professionals regularly face health treatment decisions. According to patients, 17 important health treatment decisions in rheumatoid arthritis care can occur. The most commonly reported treatment decisions concern the use of medication. A variety of preferences and values could guide patients’ health treatment decisions. We found 66 values among four domains of values – decisional, situational, external or global. Patients and professionals should therefore elicit values continuously to improve therapy compliance, quality of care and quality of life.

Data Sharing Statement

All data are archived by the last author (HV).

Ethics Statement

No ethical approval from a medical ethics committee was needed under Dutch law (WMO) as the study did not involve any interventions designed as part of the study. Written informed consent to participate in this study and to publish anonymized responses was provided by the participants. This study was conducted in accordance with the Declaration of Helsinki.

Patient Authors

Bertha Maat, Theo Foekens, Gerardine Willemsen-de Mey.

Acknowledgments

We would like to thank patient partners of RZN and patients for their contribution to this study.

Author Contributions

All authors contributed to data analysis, drafting or revising the article, gave final approval of the version to be published, agreed to the submitted journal, and agreed to be accountable for all aspects of the work.

Funding

This study was funded by EnCorps (HV), and partly by Nationale Vereniging ReumaZorg Nederland.

Disclosure

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as potential conflicts of interest. Bertha Maat, Theo Foekens, Gerardine Willemsen-de Mey are patient authors for this study. The authors no other conflicts of interest in this work.

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