Oneweb's List: Recovery - patient defined

• What patients say about outcomes

  When asked what they would consider treatment success, patients with chronic pain specify a large reduction in pain intensity, by 50% or more [17-19]. Their ideal outcome is pain intensity of 3/10 or below on a 0–10 NRS, or its equivalent when pain is rated categorically, i.e. no worse than mild pain. They also want substantial reductions in fatigue, distress and the loss of quality of life that accompanies chronic pain. Chronic pain patients want mean decrements in excess of 50% on measures of interference on either the Brief Pain Inventory (BPI) or the Multidimensional Pain Inventory (MPI) [20]. Patients in this latter study thought that an acceptable level of pain was around 3–4/10, no worse than mild pain. Much the same is true in migraine, where the outcome specified is that of complete pain relief [21].

• Pain, disability, and perceived recovery were measured by questionnaires at baseline and after 3, 7, and 12 weeks

• So why my disquiet? Essentially, they argue for a redefinition of the term ‘recovery’ such that it would cease to mean restoration  to health but rather the capacity to ‘live well with enduring symptoms and vulnerabilities [which would open] the possibility of recovery to all’ (my italics).
• as if to say that this legitimisation by governments both authenticates and authorises  a change in use of language or, as some might say, a misuse of language. What is certain is that the involvement of governments  in this endorsement of a peculiar departure in ordinary language use demonstrates that we are here dealing with the politics  of health care and not the clinical aspects
• Renaming  these events or denying their obdurate reality is perhaps unhelpful to those who suffer. In any case, as doctors we have a  fiduciary duty to be truthful that transcends the wish to please all.
• it seems clear that the duty of the doctor is to establish as reliably and accurately as possible the course and outcome of  clinical conditions. It is also the duty of doctors to continue to work to improve the treatments available in order to maximise  the likelihood of recovery, and here I mean real recovery, i.e. restoration to health. We would not normally speak of recovery  in Alzheimer’s disease, motor neuron disease, multiple sclerosis or Parkinson’s disease unless there was empirical evidence  of such recovery. It seems obvious to me that a redefinition of the term ‘recovery’ in order to give hope is to build hope  on illusion.
• It is recognition that the appropriation of  ordinary words to describe the world in ways totally opposed to the original meaning carries with it the risk of alienating  people further from the group proposing to use the words in this way.

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• ‘Recovery’ is usually taken as broadly equivalent to ‘getting back to normal’ or ‘cure’, and by these standards few people  with severe mental illness recover. At the heart of the growing interest in recovery is a radical redefinition of what recovery  means to those with severe mental health problems. Redefinition of recovery as a process of personal discovery, of how to  live (and to live well) with enduring symptoms and vulnerabilities opens the possibility of recovery to all.

• CONCLUSION:

  The construct of recovery for typical back pain patients seeking primary care is more complex than previously recognized and is a highly individual construct, determined by appraisal of the impact of symptoms on daily functional activities as well as quality of life factors. These findings will be valuable for reassessing how to optimize measures of recovery from low back pain by addressing the spectrum of factors patients consider meaningful.

• While the global rating of change scales was not designed to explicitly measure recovery, the scales include an anchor of ‘Completely Recovered’.
• This is in contrast to the approach outlined above, where the researchers determine what domains they regard as important in the subject’s recovery
• A relevant question is whether recovery should be considered a dichotomous or a continuous construct.

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• Outcome measures were days until return to work, total days of sick-leave, pain, functional status, kinesiophobia, and perceived recovery and were assessed at baseline and at 3 and 6 months of follow-up. P

• Measures

  Depression was assessed with the 9-item Patient Health Questionnaire Depression Scale (PHQ-9:Kroenke, Spitzer, & Williams, 2001) which ranges from 0 to 27 with a recommended cut-off of 10 or above for distinguishing between clinical and non-clinical populations. Anxiety was assessed with the 7-item Patient Health Questionnaire Generalized Anxiety Disorder Scale (GAD-7: Spitzer, Kroenke, Williams, & Lo, 2006), which ranges from 0 to 21.

• Outcome indices

  Previous reports of outcomes in IAPT services have used the “recovery” index. An individual is judged to have recovered if s/he is a case at pre-treatment and has dropped below the clinical/non-clinical cut-off for depression and anxiety at post-treatment. This measure does not take into account whether the observed change is greater than the measurement error of the scales. As a consequence, a patient who starts treatment just above the clinical threshold and finishes treatment just below it will be classified as “recovered” even if the improvement is not statistically reliable.
• To get round this problem, we used a “reliable recovery” index. Patients were deemed to have reliably recovered if they scored above the clinical cut-off on the PHQ-9 and/or the GAD-7 at initial assessment, they showed reliable improvement during treatment, and they scored below the clinical cut-offs on both the PHQ-9 and the GAD-7 at the end of treatment.
• Reliable improvement was assessed using Jacobson and Truax's (1991) reliable change criteria. The measure of reliability used for the PHQ-9 and the GAD-7 was Cronbach's α, taken from the validation studies of the measures (Kroenke et al., 2001; Spitzer et al., 2006). To be considered reliable, pre-post change on the PHQ-9 needed to exceed 5.20. For the GAD-7 the comparable value was 3.53. Patients were considered to have shown reliable improvement if their PHQ-9 or GAD-7 score reliably decreased and the score for the other scale either did the same or did not reliably deteriorate.

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• But symptom remission alone is inadequate for a definition of recovery from schizophrenia, just as it would be for diabetes and coronary artery disease. Dimensions of improved psychosocial functioning must also be integral to a definition of recovery. As noted below, these dimensions include work, school, family life, friends, recreation, and independent living. These dimensions also will require consensus among practitioners, researchers, patients, and family members in operationalizing levels of functioning that would be consistent with a definition of recovery.
• In addition, we conducted structured interviews with a group of 55 persons—consumers, family members, mental health professionals, and paraprofessionals—all of whom were engaged in schizophrenia treatment (42). Three-fourths of the respondents endorsed the criterion related to living independently, two-thirds endorsed the criterion related to social and recreational activities and school and work, and one-half endorsed the criterion for remission of psychotic symptoms
• Distinguishing "recovering" from "recovery" in schizophrenia with operational criteria for both may promote greater clarity and empirical research on the construct of recovery. In the current literature and professional parlance, recovery has been associated with as many meanings as there are proponents of this term. It is time to move the construct to a researchable concept with broad and credible consensual validation.
• A variety of criterion-referenced definitions will help move the important goal of recovery into the mainstream of psychiatric research.
• Social validation of the construct of recovery can be studied by submitting various operational definitions of recovery to groups of clinicians, patients, consumer activists, family members, advocates, researchers, and even laypersons. Social validity refers to the endorsement and acceptance of the operational definitions of recovery by a wide range of individuals whose values are congruent with prevailing social norms, standards, and expectations. Thus, because definitions of recovery should be consistent with normative behavior, dimensions that are within the range of what most people would consider as "within normal limits" provide social validity to the construct. For example, in today's harsh employment climate, working half-time might be considered by most people to be within normal limits.
• Without methodologically solid social validation, the construct of recovery will suffer from lack of credibility.

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• What are the defining characteristics of a recovery-focussed mental health service? Recovery is understood to mean something different to either sustained remission or cure – it is a way of ‘…living a satisfying, hopeful, and contributing life even with the limitations caused by illness’. (9, p.527).
• Some researchers have insisted on symptomatological and functional improvement (rather than patient-defined criteria) as the sole indicator of recovery (14, 15). Others commentators express the view that the term ‘recovery’ is vacuous –‘a redefinition of the term ‘recovery’ in order to give hope is to build hope on illusion’ (16, p. 48). Services have appropriated the term without meaningfully changing their function, e.g. re-labelling rehabilitation services as ‘Recovery and Rehabilitation Services’. These responses are all consistent with an aim of maintaining the status quo. They may be the most appropriate responses, but the paucity of evidence means that it is currently impossible to have an informed debate.

• The most important definitions of remission, and of clinically significant improvement, are those made by the patient. If  the patient does not consider her or himself significantly improved or in remission, the disease will likely continue to impair  the patient’s life, and (s)he will continue to seek additional health care. Patient centred definitions of significant improvement  and remission are important end points for clinical trials in ulcerative colitis. However, we are unlikely to obtain objective  data by simply asking patients in clinical trials if they are improved or in remission. Subjects in therapeutic trials both  want to believe they are getting better and want to please the investigator, and are likely to over report improvement and  remission in the setting of a clinical trial. Therefore, it is important to derive objective measures that can identify patients  in remission outside of the context of a therapeutic trial.
• Logistic regression and receiver operating characteristic (ROC) curve analyses were conducted to determine whether a cut off  point on disease activity indices could be reliably used to predict patient defined remission.

• Patient defined change in clinical status correlates with common disease activity indices

     

  For the non-invasive indices, we had complete return visit data after 1–14 months of follow up for 56 individuals who reported  the change in their clinical status on a seven point Likert scale (fig 5A). Ranging from 1 = much better to 7 = much worse,  subjects selected one point on the scale. A box plot for each point on the Likert scale in each non-invasive activity index  versus the change in score of each index is presented in fig 5B–D. The Spearman correlation coefficients between the Likert  scale for improvement and the SCCAI, Seo index, and IBDQ were 0.70, 0.59, and −0.64, respectively. The magnitude of the change  in non-invasive indices was an accurate measure of patient perceived change in clinical status. 

• DISCUSSION

     

  Dichotomous clinically significant end points are appealing for clinical trials, as they are easy to understand and, when  achieved, they support the clinical significance of the outcome of a clinical intervention.
• Patient centred definitions of clinically significant outcomes are necessary to determine if therapies will be perceived as  beneficial by patients with disease. If improvement by an arbitrary number of points on a validated scale is not perceived  as significant improvement or remission by patients, they will seek additional or alternative health care.
• The gap between these two end points of remission and relapse is explained in part by the difference between patient defined  remission and clinician defined relapse, and in part by the different populations in each study. In our experience, three  or four points on the SCCAI appears to be a “grey zone” in which patients are not entirely in remission (our study), yet not  clearly in relapse (Jowett data). We would prefer to set a rigorous standard (2 points or lower) for achieving remission on  the SCCAI, rather than leave patients dissatisfied with a “remission” of 3 or 4 points on the SCCAI that they do not perceive  as remission.

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• The only true measures of quality are the outcomes that matter to patients

• Don Berwick, distinguished health quality guru and, until recently, in charge of the Center for Medicare and Medicaid Services, long ago pointed out that “The ultimate measure by which to judge the quality of a medical effort is whether it helps patients (and their families) as they see it.”1 This may seem a statement of the obvious, but it has taken a surprisingly long time for any health service to systematically collect information from patients about their health status.

• generally show much larger responses to treatment than “hard” outcomes that matter to patients, such as renal and visual impairment or quality of life.