Clinical Recovery, Personal Recovery and Quality of Life in people affected by schizophrenia spectrum disorders; problems and reciprocal relationships. A narrative review

In recent years, Clinical Recovery, Personal Recovery and subjective Quality of Life have emerged as the most frequently used measures of outcome for schizophrenia spectrum disorders. However, how and to what extent these constructs are related to each other remains a matter of debate. The apparent distinctive nature of both Clinical and Personal Recovery has been substantially confirmed by small/medium mean weighted inverse correlation coefficients between the parameters of personal and clinical recovery. The construct of subjective quality of life appears to be more closely correlated to personal than clinical recovery, ostensibly representing one of the stronger mediators in the reciprocal relationship between personal and clinical recovery.

INTRODUCTION

For many years, the Kraepelinian tradition associated schizophrenia with a fundamentally negative vision of its course and outcome ¹, until a series of longitudinal studies revealed a considerably favorable prognosis across a consistent proportion of patients ². This evidence led to a more optimistic view of schizophrenia and related disorders, although a substantial heterogeneity of outcomes, largely caused by methodological issues such as sample characteristics, diagnostic criteria, follow-up assessments, and outcome measures still continues to be observed in scientific studies ². In recent years, outcomes have been described using two distinct terms: on the one hand, “clinical” outcomes, including symptomatic remission, functional remission, and clinical recovery, whilst on the other “patient-centered outcomes” such as personal recovery, quality of life, subjective wellbeing and life satisfaction ^3,4. More recently, a new measure, “life engagement”, a holistic construct encompassing a series of personal outcomes including life satisfaction, wellbeing and participation in valued and meaningful activities has been proposed ⁵. In general, clinical recovery, personal recovery and quality of life represent the most frequently used outcomes in schizophrenia spectrum disorders, although how and to what extent they are related to each other remains a matter of debate. The aim of the present narrative review is to summarize the state of the art relating to this issue.

CLINICAL AND PERSONAL RECOVERY AND THEIR MUTUAL RELATIONSHIPS

Despite the many methodological limitations of the construct, in the majority of studies, clinical recovery is generally conceived as a “bidimensional” construct, with both clinical and functional remission included as aspects requiring concurrent consideration and evaluation based on specific criteria ⁶. Clinical recovery also represents the optimal treatment outcome and, as such, constitutes the most relevant and comprehensive outcome measure for schizophrenia spectrum disorders ^7,8; however, a series of issues (Tab. I) inevitably result in differences between the rates of patients who achieve recovery. Indeed, the existing heterogeneity in defining clinical recovery may account for the variation observed in the estimated proportion of people with schizophrenia who achieve recovery, which ranges from 13.5% to 50%.

Personal recovery has been described by Warner ⁸ as “the subjective experiences of hope, healing, empowerment and interpersonal support experienced by people with mental illness”, while the official definition provided by the Center for Mental Health Services of the Substance Abuse and Mental Health Services Administration (SAMHSA), is: “ Mental health recovery is a journey of healing and transformation enabling a person with a mental health problem to live a meaningful life in a community of his or her choice, while striving for achieve his or her full potential” ⁹. Gaining personal recovery is considered a multi-factorial process, involving not only patients but also their families and mental health workers (Tab. II).

Typically characterized as an individual journey, there has been convergence in the identification of processes involved in personal recovery with five themes, summarized by the acronym Connectedness-Hope-Identity-Meaning-Empowerment (CHIME): greater social connectedness (C) fostering hope and optimism (H), transformation of Identity from one dominated by stigma and a passive patient role (I), developing new meaning in life (M), empowerment and responsibility for self-managing mental health (E) ¹⁰. As an important novel outcome, new instruments were required to measure Personal Recovery. Indeed, a series of questionnaires has been validated, including the Recovery Assessment Scale (RAS) ¹¹, Questionnaire about the Processes of Recovery (QPR) ¹², and the Mental Health Recovery Measure (MHRM) ¹³. Unfortunately, no gold standard is available ¹⁴ and the generalization of results is limited by cultural and linguistic factors. Moreover, the broad and multidimensional construct of personal recovery may generate ambiguous interpretations, thus highlighting the need for a wide scientific consensus on a well-defined construct of personal recovery ¹⁵. Although substantially diverse, the two conceptions of recovery described above are considered complementary rather than opposed ¹⁶, being deemed of equal weight and importance in assessment of the final functional outcome ¹⁷.

In view of the distinctive nature of both Clinical and Personal Recovery, the absence, or a low or moderate level, of correlation between both forms should be expected. Literature data seem to confirm the latter hypothesis. A metanalysis of 29 studies ¹⁸ comprising a total of 6727 outpatients, performed to investigate the relationship between measures of subjective recovery with each of the components of clinical recovery (symptom severity and functioning) in patients with schizophrenia spectrum disorders, found a significant, although weak and inverse association (-0.18, z = -2.71, p < 0.01) between different components of personal recovery and remission in terms of weighted average effect sizes, although the finding was deemed non-significant at sensitivity analysis. Accordingly, patients with a higher severity of general psychopathology displayed a slightly lower rate of personal recovery. A significant and moderate relationship (+0.26, z = 7.894, p < 0.0) was observed between functionality and personal recovery; based on the use of adequate sensitivity indices, this finding implies how better functioning patients reported a moderately higher degree of personal recovery. Overall, this study revealed a low-moderate correlation between subjective measures related to the patient’s perspective and clinical measures based on expert/clinician evaluations. A random effect meta-analysis of 37 studies investigating the relationship between clinical and personal recovery in patients with schizophrenia spectrum disorders showed small/medium mean weighted inverse correlation coefficients between parameters of personal and clinical recovery such as symptom severity (r = -.21), positive symptoms (r = -.20), negative symptoms (r = - .24), affective symptoms (r = -.34) and functioning (r= -20.), with psychotic symptoms showing a smaller correlation than affective symptoms with personal recovery ¹⁹. Briefly, both the above-cited meta-analytic studies highlight the presence of a somewhat modest, but nevertheless reciprocal, relationship between clinical and personal recovery. This is better depicted in the findings of a French one-year follow up study of 1239 consecutively recruited, clinically stabilized persons with schizophrenia-spectrum disorder (SSD), assessed for clinical and personal recovery at baseline, with 507 subsequently re-evaluated one year later²⁰. The study found that clinical recovery and personal recovery predicted each other over time, with a 5-fold likelihood of subjects found to be in personal recovery at baseline remaining in clinical recovery after one year and a 3-fold likelihood of those deemed to be in clinical recovery at baseline of remaining in substantial personal recovery. These results would seem to indicate a reciprocal influence between Personal and Clinical Recovery. On the one hand, personal recovery may lessen the effects of psychotic symptoms on emotional distress, social relationships and overall functioning, whilst on the other, clinical recovery may contribute to personal recovery through the positive effects of stable symptom remission and long-term functional remission on wellbeing and quality of life. The peculiar complexity of the relationships between self-reported personal recovery and clinical recovery in schizophrenia is also underlined in the findings of a study conducted by the Italian Network for Research on Psychoses on personal recovery and clinical recovery in schizophrenia ²¹. The study sample included 903 subjects affected by schizophrenia; personal recovery was assessed by means of a series of self-reported questionnaires, whilst clinical recovery was evaluated according to results obtained at PANSS for symptomatology and PSP for personal and social functioning. A cluster analysis of self-reported personal recovery-related variables yielded three distinct clusters: the first and third clusters, respectively, included patients featuring the best and poorest clinical outcomes, whilst the second cluster was comprised of patients with an intermediate outcome, in terms of a more complex pattern, represented by a paradoxical mixture of positive and negative personal and clinical features of recovery and more positive level of insight. These results suggest the need for people affected by schizophrenia to be characterized in the dimensions of both personal and clinical recovery to facilitate the design of individualized and integrated treatment programs.

In synthesis, at the current state of the art, clinical and personal recovery should not be considered equivalent or strictly complementary measures. Indeed, clinical recovery, in terms of symptom control or even remission and a reasonable degree of functioning in family life, social life, work, school, illness self-management, independent living, and recreational activities²², may not be sufficient, or even necessary, to facilitate the achievement of individual needs such as the setting of ways of life and goals, subjective wellbeing and life satisfaction. Conversely, recovery is likely not a unitary construct in which different measures converge, but rather a multifaceted construct that includes a series of different domains related to symptoms, community functioning, and personal recovery ²³.

QUALITY OF LIFE, CLINICAL/PERSONAL RECOVERY AND MUTUAL RELATIONSHIPS

The Quality of Life may be defined as “how people view their position in life in the context of their social environments and in relation to their goals, standards, and concerns” ²². ThewTheett construct of Health-related Quality of Life has been defined as “the individuals’ overall perception of how an illness and its treatment affect the physical, psychological, and social aspects of their lives” ²³. Indeed, mental disorders produce a negative effect on the subjective quality of life of people affected by mental disorders ²⁴, with particular reference to schizophrenia spectrum disorders ^25,26. Similarly to the assessment of Personal Recovery, more than twenty rating scales have been published to date for use in the evaluation of Quality of Life, with the Lancashire Quality of Life Profile (LQOLP), the Self-Report Quality of Life Scale (SQOL), the Quality of Life in Schizophrenia scale (QLiS) and the WHO Quality of Life Scale (WHO-Qol) being the most widely-used, although none have proved notably more effective than the others ^27-30. Personal Recovery and subjective Quality of Life are generally viewed as two distinct concepts and measures of outcome, although some authors are of the opinion that the term “recovery”, as conceived originally by patient movements, conveys a similar meaning to the concept of Health-related Quality of Life. Indeed, both concepts seem to reflect the “holistic perspectives” of patients with regard to different life domains ^31,32. Moreover, a significant correlation between Personal recovery and Quality of Life has been demonstrated by several research studies. A study of 201 outpatients with schizophrenia, schizophreniform or schizoaffective disorder conducted by means of the application of a canonical correlation analysis to screen variables highly correlated with quality of life, revealed how the resulting bestfit model justifies 80.7% of the variance in WHOQoL-Bref score; in particular, the effect of psychosocial functioning on quality of life was highest (total beta = -0.64), followed by aspects of personal recovery including sense of personal agency (total beta = 0.58), sense of optimism (total beta = 0.54), perceived support (total beta = 0.47), and internal stigma (total beta = -0.42) ³³. Another study of 356 people with schizophrenia randomly selected from 12 communities in China, found that 36.5% of the sample was in clinical recovery (66.6% in symptomatic remission and 40.7% in functional remission), 17.42% in personal recovery, and only 8.9% of individuals were in overall recovery (i.e. meeting criteria for both clinical and personal recovery). Furthermore, the same study found only a modest correlation (r = 0.26) between clinical and personal recovery, with overall recovery correlating with quality of life alone, which was, in turn, the sole common correlate for both clinical and personal recovery ³⁴. A further study conducted by the same group using a serial mediation analysis found that clinical recovery was not directly related to personal recovery when accounting for disability and quality of life; in particular, clinical recovery was a significant predictor of disability, predicting quality of life and subsequently personal recovery; among the three mediation paths, quality of life accounted for the majority of the mediation effect (54%), followed by disability (24%), and disability and quality of life serially (22%) ³⁵. In the above-cited one-year follow up study of 1239 clinically stabilized persons with schizophrenia-spectrum disorder ²⁰, a moderation/mediation analysis observed how the effects of clinical recovery at baseline on stable personal recovery at follow-up were partially mediated by depression (beta = 0.06; p = .018) and quality of life (beta = 0.11; p = 0.15), whilst depression (beta = 0.03; p = .026) and psychosocial function (beta = 0.13; Pp = .002) partially mediated the effects of personal recovery at baseline on stable clinical recovery at follow-up. To summarize, the construct of subjective quality of life seems to be increasingly correlated to personal rather than clinical recovery; moreover, this construct ostensibly represents one of the stronger mediators in the reciprocal relationship between personal and clinical recovery.

OPEN PROBLEMS AND RESEARCH PERSPECTIVES

A significant amount data shows a small-medium level of association between clinical and personal recovery, so that both should be considered in treatment and outcome monitoring of patients ¹⁹. Although a consistent amount of data about clinical recovery rates have been reported in outcome studies ^2,26-37, a recent metanalysis reports only 4% of studies on outcome prediction in schizophrenia considering Clinical Recovery as main outcome measure ³⁸, showing a still existing research gap to be filled. Even more puzzling is the situation regarding Personal Recovery, generally not included as an outcome measure in clinical studies on schizophrenia, being Quality of Life mostly used in studies as a proxy. Indeed Several meta-analyses report an improvement in Qol measures, evaluated among secondary outcome parameters, in patients under antipsychotics ^39,40-43. Similar results emerge from meta-analytic studies regarding the efficacy of psychosocial or psychological treatments in Schizophrenia and related disorders, where Qol was evaluated as a secondary outcome ^44-47, whilst three meta-analyses were specifically devoted to evaluate Qol in relation to different psychological/psychosocial interventions, showing again an overall positive impact ^48-50. However, even though significant correlations exist between most personal recovery components and quality of life measures ⁵¹, they remain and should be evaluated as distinct aspects. Taking into account the crucial importance of Personal Recovery, particularly in the context of a “recovery oriented” system of care, less focused on the traditionally predominant clinical orientation in favour a more person- centered perspective, more studies on Personal Recovery are needed using specific and validated scales such as the the IMRS (Illness Management and Recovery Scale) ⁵² and the RAS (Recovery Assessment Scale) ⁵³ with more evidence-based proofs of effectiveness of “recovery oriented” systems of care as regard to perception of personal recovery by service users.

CONCLUDING REMARKS

The concept of Recovery, both clinical and personal, has constituted one of the most relevant advances in Psychiatry in the last century, either because changed minds as regard to the absolute pessimistic view of schizophrenia and because contributed to change the approach to care, making clear the necessity of an integrative approach between pharmacotherapy and psychosocial interventions and of a personalization of treatments. Undeniably, introducing Recovery as target of treatments has been a huge theoretical advance, but also a rising the bar of our standard of care and a challenge for research. “Research is better than rhetoric” was the title of an important paper on Recovery published years ago ⁵⁴. We still need research to fill the existing gaps, in order to further support the recovery model with solid evidences.

Conflict of interest statement

The Authors declare no conflict of interest.

Funding

The paper was not supported by public or private sources of funding.

Authors contribution

BC contributed to collect the bibliographical sources and to write the paper; MM, PP and FP contributed to collect bibliographical sources and to revise the text.

Ethical consideration

The paper regards a narrative review without ethical implications.

Figures and tables

TABLE I. Problems in evaluation of Clinical Recovery.

Conceptual heterogeneity of clinical recovery. Methodological differences present in the instruments and criteria of evaluation used to assess the different dimensions of recovery. “Dimensions” taken into account (type, number, duration). Samples considered in the study (e.g. incident cases, prevalent cases or mixed samples; patients with schizophrenia or with schizophrenia spectrum psychoses or simply with “psychosis”, FEP or multiple episode). Study design (retrospective, prospective, mixed).

From Carpiniello et al. (modified) 6.

TABLE II. The ingredients of Personal Recovery.

enhancing personal control and the self-determination of patients; implementation of person-centred treatment to enhance recovery; empowerment; enhancement of holistic well-being in mental, spiritual, and social domains; awareness of the non-linear nature of recovery and recognition that positive change is possible for patients; implementing strength-based intervention, such as building resilience; strengthening patient-peer support among individuals with mental disorders; promoting respect at a personal level and eliminating stigma from society; encouraging patients to bear responsibility in recovery and personal health care; instillation of hope for recovery.

From SAMSHA, modified 9.