Assessing collaborative efforts of making care fit for each patient: A systematic review

Abstract Introduction For too many people, their care plans are designed without fully accounting for who they are, the lives they live, what matters to them or what they aspire to achieve. We aimed to summarize instruments capable of measuring dimensions of patient–clinician collaboration to make care fit. Methods We systematically searched several databases (Medline, Embase, Cochrane, Scopus and Web of Science) from inception to September 2021 for studies using quantitative measures to assess, evaluate or rate the work of making care fit by any participant in real‐life clinical encounters. Eligibility was assessed in duplicate. After extracting all items from relevant instruments, we coded them deductively on dimensions relevant to making care fit (as presented in a recent Making Care Fit Manifesto), and inductively on the main action described. Results We included 189 papers, mostly from North America (N = 83, 44%) and in the context of primary care (N = 54, 29%). Half of the papers (N = 88, 47%) were published in the last 5 years. We found 1243 relevant items to assess efforts of making care fit, included within 151 instruments. Most items related to the dimensions ‘Patient‐clinician collaboration: content’ (N = 396, 32%) and ‘Patient‐clinician collaboration: manner’ (N = 382, 31%) and the least related to ‘Ongoing and iterative process’ (N = 22, 2%) and in ‘Minimally disruptive of patient lives’ (N = 29, 2%). The items referred to 27 specific actions. Most items referred to ‘Informing’ (N = 308, 25%) and ‘Exploring’ (N = 93, 8%), the fewest items referred to ‘Following up’, ‘Comforting’ and ‘Praising’ (each N = 3, 0.2%). Discussion Measures of the work that patients and clinicians do together to make care fit focus heavily on the content of their collaborations, particularly on exchanging information. Other dimensions and actions previously identified as crucial to making care fit are assessed infrequently or not at all. The breadth of extant measures of making care fit and the lack of appropriate measures of this key construct limit both the assessment and the successful implementation of efforts to improve patient care. Patient Contribution Patients and caregivers from the ‘Making care fit Collaborative’ were involved in drafting the dimensions relevant to patient–clinician collaboration.


| INTRODUCTION
The design of care plans often ignores who the patient is, the life they live, what matters to them or what they aspire to achieve. In other words, these care plans are generic, that is, for 'patients like this' rather than for 'this patient'. When patients cannot accommodate the demands of living with illness and care, and of navigating the healthcare system, they may be unable to access and use healthcare services as configured and may not implement complicated treatments with sufficient fidelity. 1 These effects will result in unfavourable biomedical and psychosocial outcomes, particularly amongst patients rendered vulnerable by unfair societal structures such as race or class discrimination and patients in challenging phases of life. [2][3][4][5] In the United States, for example, the high price of insulin to patients with diabetes forces one in four of them to ration this lifesaving medication. 6 Similarly, a recent survey found that one-third of adults report foregoing, and 4 in 10 delaying, recommended medical treatment due to cost. 7 At the same time, patients with seemingly excellent 'disease control' and biomedical outcomes may reach these outcomes only at the expense of those aspects of life that make life worth living in the first place. 8 An older man on a diuretic for cardiac insufficiency may stop taking his grandchild fishing because of urinary incontinence. A patient on a complex insulin regimen with frequent episodes of hypoglycemia may forego social outings to avoid 'embarrassing disruptions'. These instances represent inadequate care as it fails to respond to the personal, medical and psychosocial needs of patients and to effectively weave care activities with daily life demands. Care is rendered inadequate when generic plans are offered, drawn from what is recommended for 'patients like this'. Failure to carefully design care for 'this patient' is wasteful and harmful as care that does not fit is care patients do not need, want or cannot implement well. 9,10 Making care fit can take place at the 'point of life', a practice of self-management mostly in the patient's personal environment which can be assisted, when pertinent, by family, friends and colleagues. In this personal setting, patients usually (re)consider the rational, emotional and practical sense of their care. The patient is usually the only person able to link up and coordinate these efforts with efforts to make care fit that take place at the 'point of care'. To this end, patients and clinicians collaborate during clinical encounters to co-create plans of care and treatment. 11 Unless raised during these encounters, patients' trials and successes in making care fit at the point of life will remain largely invisible to clinicians at the point of care and, thus, will be left unconsidered when designing plans of care to address the patient's situation. 9 Recently, an international and interdisciplinary group of patients, caregivers, clinicians, researchers, healthcare designers and policymakers published the 'Making Care Fit Manifesto'. 12 They describe that to make care fit, patients and clinicians work together in designing care, making sure their plans maximally respond to the patient's unique situation and priorities and minimally disrupt the patient's lives and social networks. This is an ongoing and iterative process, where patients and clinicians continuously re-evaluate whether care still fits in people's lives and whether people's lives can still be lived alongside these plans of care. 8,12 To evaluate the extent to which making care fit takes place in clinical encounters and the efficacy of interventions to improve these efforts, we need reliable and valid instruments that measure all key dimensions of making care fit. While many measurement instruments may be available to assess specific components of patient-clinician collaboration, 13,14 it is unclear whether and how they measure the full breadth of efforts to make care fit. 12,15 We set out to inventory available items and instruments capable of measuring all key dimensions of making care fit.

| METHODS
The conduct of this review followed a registered protocol (PROS-PERO CRD42021236192) and the review report adheres to the Preferred Reporting Items for Systematic reviews and Meta-Analyses statement. 16

| Eligibility criteria
We sought to include any study (or protocol of study) evaluating the occurrence, quality or satisfaction with behaviours potentially related to making care fit during a clinical encounter between patients and clinicians (any health professional in direct care interaction with patients) from any perspective (i.e., patient, caregiver, clinician, third-party observer) using any measurement instrument. We did not institute language restrictions.
We excluded encounters with simulated participants or participation.  We only excluded papers if two reviewers agreed to exclude them. Full texts of papers in a language other than English were reviewed by one reviewer only (from our team or our network, see Acknowledgements) unless that reviewer suggested a second opinion. We extracted data on each relevant instrument only once. We extracted items from the first identified paper that used the instrument and recorded which other papers also described its use.

| Data extraction
Unless the authors stated they adapted items, we did not compare the wording of the items between the papers or with the original development or validation paper of that instrument.
In case of missing data, we checked whether the authors referred to another paper on the development, validation or use of the instrument of interest. If this approach did not lead to the data, we contacted the authors. If the corresponding author could not be reached, we contacted the first and/or last author. We sent a reminder after 2 weeks and reported data as missing if we received no response after 4 weeks. Papers and instruments were excluded only if the actual measurement items were missing. Over the course of 2 days, they used several co-creation methods to formulate dimensions relevant to patient-clinician collaboration to make care fit well, and to prioritize future work in this area, including work on relevant outcomes and evaluation of effects, and supporting patient-clinician collaboration. 12 Details on the characteristics of the Collaborative and the methods used are reported in the Manifesto and its online supplement. 12 The Collaborative's dimensions and priorities are at the core of this review's focus.

| Actions relevant to making care fit
Third, the two reviewers coded in consensus the main action described in each item (e.g., informing, exploring). Action terms were created inductively, based on item wording. Whenever a new action term was discovered, all previously coded items were checked again.

| Final check
Finally, we sorted all items according to their coded combination of dimension and action term. The two reviewers double-checked the codes and in consensus changed any inconsistencies. All codings were then discussed amongst the research team.  full-text screening phase, we screened papers in 16 languages; 24

| Identified papers
papers were in a language other than English.
We contacted the authors of 87 eligible papers for missing measurement items. The authors of 54 papers did not respond (62% of those contacted, 19% of eligible papers). Of these, 39 papers were excluded, and 15 were included as they described at least one other potentially relevant instrument in their paper. In total, 61 seemingly unique instruments remained unavailable for analyses (listed in Supporting Information: Appendix C).
We included 189 papers, mostly from North America (N = 83, 44%) and in the context of primary care (N = 54, 29%). Almost half of the papers (47%) were published in the last 5 years (see Table 2, detailed paper characteristics in Supporting Information: Appendix D).

| Identified instruments and items
The As an illustration, to include subscales to assess specific dimensions or actions, particularly to orient this assessment towards practice improvement.
In doing so, we need to avoid improving processes without improving care. 29 It is, therefore, crucial to focus also on the extent to which collaborative processes to make care fit contribute to care that actually fits. 25 Helped to plan ahead so I could take care of my illness even in hard times (14) Note: Numbers in brackets following the items refer to the instrument identification number as used in Supporting Information: Appendix D.