ABSTRACT
Introduction
It is increasingly apparent that the most used patient‐reported outcome measure in health‐related quality of life (HRQL) soft‐tissue sarcoma research (Toronto Extremity Salvage Score) is limited by its exclusive focus on physical function. It is now recommended that it only be used in combination with other global outcome measures, such as the Reintegration to Normal Living Index (RNLI) and Euroqol‐5D‐3L (EQ‐5D‐3L). We assessed the measurement properties of the RNLI and EQ‐5D using the Wilson‐Cleary Model and sought to better understand health perceptions and HRQL at 12 months post‐op.
Methods
Data for this secondary analysis were drawn from an inception cohort of people receiving care for soft‐tissue sarcoma at our institution. Inclusion criteria were being ≥ 18 years old and a diagnosis of localized soft‐tissue sarcoma (biopsy‐confirmed). Measures included the MSTS‐87 (pain), RNLI (health perceptions), and EQ‐5D‐3L (HRQL). RStudio was used to calculate descriptive statistics, assess internal consistency, and evaluate the measurement and structural models.
Results
The study sample (n = 276) was 45% female with a mean age of 56 (18). Internal consistency was high with the RNLI (α = 0.91) and acceptable with EQ‐5D‐3L (α = 0.74). Findings suggested good model fit with the measurement model (CFI = 0.98, RMSEA = 0.37, SRMR = 0.0) and structural model (CFI = 0.98, RMSEA = 0.37, SRMR = 0.08). Moreover, HRQL appeared most impacted by the ability to engage in daily activities (work/study, home maintenance, family affairs, and leisure).
Conclusion
The RNLI (health perceptions) and EQ‐5D (HRQL) appeared to be reliable and valid with this patient group. Findings suggest targets for optimizing soft‐tissue sarcoma outcomes are maximizing functional restoration, encouraging participation in fulfilling activities throughout recovery (even if adapted), and routine psychosocial distress monitoring.
Keywords: health perceptions, HRQL, soft‐tissue sarcoma, Wilson‐Cleary Model
Synopsis
We used structural equation modelling, grounded in the Wilson‐Cleary Model of health‐related quality of life, to assess the measurement properties of two commonly used outcome measures in clinical practice: the Reintegration to Normal Living Index (health perceptions) and EuroQol‐5D‐3L (health‐related quality of life).
Both measures demonstrated internal consistency and measurement validity, and the Wilson‐Cleary Model appeared to be a valid way to conceptualize HRQL in our sample.
Moreover, findings suggest critical targets for optimizing outcomes in soft‐tissue sarcoma include maximizing functional restoration, participation in fulfilling activities throughout recovery, and routine distress monitoring.
1. Introduction
Soft‐tissue sarcoma is a rare cancer of the connective tissues. It typically develops in the extremities and during working years (20–60 years of age) [1]. The first‐line treatment for localized soft‐tissue sarcoma is neoadjuvant radiotherapy and wide resection [2], which has a high incidence of serious complications (e.g., tissue necrosis, severe infection, wound dehiscence) and often results in lasting functional impairment [3, 4, 5, 6, 7, 8]. Achieving the correct balance between wide surgical margins and preserving limb function is therefore a critical issue in soft‐tissue sarcoma management [1, 2, 6].
Once treatment is complete, quarterly follow‐ups are recommended for the first 2 years. Recovery can take up to a year with complications, after which functional restoration is known to plateau. At the 12 month follow‐up, persisting functional deficits are labeled permanent, which can mean major career and lifestyle changes are now in store [8, 9]. As such, soft‐tissue sarcoma treatment likely has profound, long‐lasting impacts on health‐related quality of life (HRQL) for several reasons.
Despite ongoing research on optimizing soft‐tissue sarcoma outcomes, it remains largely unclear how the disease affects HRQL and for how long [6, 7, 10]. Much of the quality‐of‐life research in soft‐tissue sarcoma has been conducted in orthopedic settings and focused exclusively on physical function [7, 10, 11]. However, HRQL is a multidimensional concept encompassing much more than physical function. By definition, HRQL refers to how a disease and its treatment affect overall well‐being [12]. HRQL is measured with patient‐reported outcome measures (PROMs), which come directly from patients without clinician interpretation. PROMs assess different aspects of well‐being and function beyond the clinical measures of physical function markers, treatment response, recurrence, and survival. Thus, PROMs provide a comprehensive assessment of outcome from the patient perspective and are essential for shared decision‐making [13].
In soft‐tissue sarcoma research and practice, the most used PROM is a disease‐specific physical function measure called the Toronto Extremity Salvage Score [5]. Increasing recognition that this disease‐specific measure is limited by its unidimensional focus led to recommendations that it be used only in combination with other global PROMs, such as the Reintegration to Normal Living Index (a generic health perceptions measure) and the EuroQOL‐5D‐3L (a generic HRQL measure). Moreover, given the unique circumstances of this disease, utilizing generic PROMs with this population requires prior methodological evaluation to ensure the collection of reliable, valid outcomes [5].
To conceptualize HRQL theoretically, Wilson and Cleary developed a rigorous HRQL model that has since been validated in several other chronic diseases [14, 15]. The Wilson‐Cleary HRQL Model integrates four major health dimensions (biological factors, symptoms, functional status, and health perceptions) along a unidirectional causal pathway (Figure A1). According to the model, health perceptions (which can be explained by biological factors, symptoms, and functional status) will predict HRQL in people with soft‐tissue sarcoma.
Our objectives were to better understand health perceptions and HRQL at 12 months post‐op and evaluate the measurement properties of the Reintegration to Normal Living Index (health perceptions) and the EuroQOL‐5D‐3L (HRQL) with the Wilson‐Cleary Model.
2. Methods
2.1. Participants
Data for this secondary analysis were drawn from an inception cohort study of people receiving care for soft‐tissue sarcoma at the McGill University Health Centre. This study was approved by the McGill University Health Centre ethics review board (approval number: MP‐37‐2020‐6167). All participants provided informed consent.
Inclusion criteria were being ≥ 18 years of age and a biopsy‐confirmed diagnosis of soft‐tissue sarcoma. Guided by expert opinion, participants were excluded if they entered the registry upon relapse or had evidence of metastasis at diagnosis, as their treatment protocol would have differed significantly.
2.2. Measures
2.2.1. Outcome: HRQL
The latent variable HRQL was measured with the EuroQOL‐5D‐3L (EQ‐5D‐3L)—a validated HRQL measure that assesses five life domains: mobility, self‐care activities, usual daily activities, pain/discomfort, and anxiety/depression [16]. Items are on 3‐point Likert scales (e.g., “I have none/moderate/severe pain”) and higher scores indicate worse well‐being.
2.2.2. Predictors: Pain and Health Perceptions
The observed variable Pain was measured with the Musculoskeletal Tumor Society pain scale. Physicians were asked to rank their patient's pain on a 4‐point Likert scale (0 = none, 1 = modest, 3 = moderate, or 5 = severe). While it would have been preferable to use a patient‐reported measure of pain, expert input advised against it because the HRQL measure used (EQ‐5D‐3L) contains an item on pain/discomfort.
Health Perceptions
The latent variable Health Perceptions was measured with the Reintegration to Normal Living Index (RNLI). Consistent with the Wilson‐Cleary Model definition of health perceptions, the RNLI assesses an individual's perception regarding the extent to which they have achieved reintegration (physical, psychological, social) and well‐adjusted living after traumatic injury or incapacitating illness [4, 17]. The RNLI asks participants to rate how well 11 statements (e.g., “I am comfortable with how my self‐care needs are met”) resonate with them on 10‐point Likert scales (1 = Does not describe me and my situation, 10 = Completely describes me and my situation).
2.3. Statistical Analyses
RStudio was used to calculate descriptive characteristics (means, standard deviations, frequencies, percentages) and assess the confirmatory factor analyses and structural equation model. The parameter estimates were derived using diagonally weighted least squares adjusted estimation, as the outcomes were ordinal and there was some evidence of violation of the normality assumption [18]. The marker method was used to set the scale [19].
Given that the χ 2 fit index is sensitive to sample size, model fit was examined with other fit indices, including the Comparative Fit Index (CFI), Tucker–Lewis Index (TLI), and Root Mean Square Error of Approximation (RMSEA) [19]. There is good model fit when CFI and TFI > 0.95, and RMSEA < 0.05, and acceptable model fit when CFI, TFI > 0.90, and RMSEA < 0.80 [19].
3. Results
3.1. Descriptive Statistics
A total of n = 368 participants met eligibility criteria; however, Lavaan automatically removed cases with any missing item response, further reducing the sample size to n = 276. Participants had a mean (SD) age of 56 (18) and were 45% female. Table B1 contains more details on demographics.
Item responses on the RNLI ranged from 0 to 10. Most had similar means, ranging from 9.02 to 9.16 (Table B1). The lowest mean was for “Ability to do work that is important to me” (mean = 7.87). Mean scores were also noticeably lower on the items on satisfaction with family role (mean = 8.87), ability to leave town (mean = 8.78), and recreational activities (mean = 8.87).
On the EQ‐5D‐3L, item responses indicated that 49% had moderate‐severe anxiety or depression (Table B1). Fewer reported problems with normal daily activities (34%), pain (29%), mobility (25%), or self‐care (13%).
3.2. Internal Consistency
Cronbach's alpha coefficients suggested the RNLI had high internal consistency (α = 0.91 [0.89, 0.92]) and the EQ‐5D‐3L had acceptable internal consistency (α = 0.74 [0.70, 0.78]).
3.3. Model Fit
Confirmatory factor analyses were conducted to assess measurement validity within the sample. Fit indices provided evidence of good model fit with the RNLI (CFI = 0.985, TLI = 0.981, RMSEA = 0.032) and the EQ‐5D‐3L (CFI = 0.977, TLI = 0.955, RMSEA = 0.069; Table B2).
Next, the measurement model was evaluated. Confirmatory factor analysis revealed evidence of good model fit with the measurement model (CFI = 0.978, TLI = 0.975, RMSEA = 0.037), which slightly decreased with covariate adjustment (Table B2). Age, sex, and education did not significantly covary with Health Perceptions or HRQL. However, Pain significantly co‐varied with both Health Perceptions (95% CI [0.070, 0.454]) and HRQL (95% CI [−0.680, −0.388]). Accordingly, age, sex, and education were not included in the structural model.
The final step was to evaluate the structural model. Again, there was evidence of good model fit (CFI = 0.977, TLI = 0.973, RMSEA = 0.036; Table B2). Pain significantly predicted Health Perceptions, which explained 52% of the variance in HRQL. Moreover, all factor loadings were significant (Table B3). Items on the RNLI with the strongest loadings were recreational activities (0.775), social activities (0.769), family role (0.735), traveling (0.729), and moving around the community as desired (0.716; Table B3). Items on the EQ‐5D with the strongest loadings were usual activities (0.795) and mobility (0.699; Table B3).
4. Discussion
Analyses revealed four main findings. First, the RNLI and EQ‐5D demonstrated good internal consistency and measurement validity with our sample. These findings indicate that the RNLI (health perceptions) and EQ‐5D (HRQL) may represent reliable, valid measures of health perceptions and HRQL for people with soft‐tissue sarcoma.
Second, this study is among the first to quantitatively evaluate health perceptions in this patient group, and it revealed novel information about health perceptions and HRQL at 12 months post‐op. Specifically, health perceptions seemed to be most affected by restricted participation in recreational activities, social activities, family affairs, and travel. In other words, it was not the physical restrictions themselves (e.g., being unable to walk very far), but the implications of the restrictions that seemed most bothersome.
Similarly, HRQL was most impacted by restricted participation in usual daily activities (work or study, household maintenance, family affairs, and leisure activities). Mobility and pain also impacted HRQL, but to a lesser extent. Our findings suggest that engaging in fulfilling activities throughout recovery, even in an adapted way, is critical. This is consistent with a growing body of research showing autonomy, competence, and connectedness are basic psychological needs [20]. Nevertheless, if a patient's recovery is unexplainedly slow or suboptimal, physicians may need to inquire about social participation and/or incorporate occupational therapy.
This is the first study, to our knowledge, to validate the Wilson‐Cleary Model in the soft‐tissue sarcoma patient group. Findings suggested the Wilson‐Cleary Model was a valid way to conceptualize HRQL with our sample of soft‐tissue sarcoma patients. Health perceptions explained a substantial portion (52%) of the variance in HRQL, and pain had significant direct and indirect effects on HRQL. In sum, our study provides promising evidence that the Wilson‐Cleary Model can be used with this patient population to inform newer, better interventions.
Lastly, the prevalence of anxiety and depression was exceptionally high. Although all participants had a personally assigned pivot nurse and free access to our institution's psychosocial oncology center, nearly 1 in 2 (49%) reported moderate‐severe psychological distress. This is significantly higher than the general Canadian population (12%) and other oncological populations (30%) [21, 22]. Moreover, given that autonomic and neuroendocrine responses to stress are linked to immune dysregulation, heightened pain perception, and worse cancer outcomes, the high prevalence of distress observed is of great concern and merits further investigation [23, 24, 25]. The added supports available may not have been sufficiently tailored or accessible. Nevertheless, as this study and many others have shown, routine distress monitoring is essential [25].
4.1. Limitations
There were more missing data than anticipated, likely due to the sensitive nature of the study and the high prevalence of emotional distress. Depression, for example, could have led to reduced motivation. Further, due to model specification restrictions, physicians indicated participants' pain levels (based on what patients reported to them). Given that physicians tend to underestimate their patients' pain [26], the effects of pain reported are likely underestimated. Finally, the 3L version of the EQ‐5D was used because it was the only available version when this inception cohort study began in 2004, but future studies may want to use the newer 5L version which has demonstrated superior measurement properties, including improved sensitivity and precision [27].
5. Conclusion
The Return to Normal Living Index and EuroQol‐5D‐3L demonstrated internal consistency and measurement validity. Moreover, the Wilson‐Cleary Model appeared to be a valid way to conceptualize HRQL in our sample.
Findings suggest that critical targets for optimizing outcomes in soft‐tissue sarcoma include maximizing functional restoration, participation in fulfilling activities throughout recovery, and routine distress monitoring. Moreover, given the systemic restraints many physicians face, occupational therapists and mental health professionals may need to play a more active role in routine soft‐tissue sarcoma care. OTs can help identify hindrances in functional restoration, make pragmatic environmental adjustments, and introduce adaptive equipment. Mental health professionals (psychologists, mental health OTs, and social workers) can help with adjusting patient expectations, as well as the development and evaluation of optimized treatment plans.
Conflicts of Interest
The authors declare no conflicts of interest. Nicole Andersen was supported by a training grant from Cedar's Cancer Foundation.
Acknowledgments
We thank Dr. Susan J. Bartlett (McGill University) for her substantial contribution to the conceptual design. We also thank Raymond Luong (McGill University) for the critical appraisal of our statistical plan.
1.
Figure A1.
The Wilson‐Cleary Model of HRQL.
Figure A2.
The structural equation model defined in accordance with the Wilson‐Cleary Model. EQ‐5D, Euroqol‐5D‐3L; RNLI, Return to Normal Living Index.
1.
Table B1.
Sample characteristics and item distributions for the RNLI and EQ‐5D.
| Mean ± SD or N (%) | ||
|---|---|---|
| Sample | Age | |
| Characteristics | Years | 56 ± 18 |
| Sex | ||
| Male | 192 (55%) | |
| Education | ||
| Primary or less | 65 (23%) | |
| Secondary | 111 (39%) | |
| Postsecondary | 109 (38%) | |
| Missing | 63 (17%) | |
| Symptoms | Pain | |
| MSTS‐87 (range 0–35) | None | 224 (72%) |
| Modest | 67 (22%) | |
| Moderate or severe | 15 (6%) | |
| Missing | 50 (14%) | |
| Health perceptions | Item 1: Move around home | 9.16 ± 2.12 |
| RNLI (range 0–10) | Item 2: Move around community | 9.12 ± . 2.11 |
| Item 3: Take trips | 8.78 ± 2.64 | |
| Item 4: Self‐care needs | 9.14 ± 2.12 | |
| Item 5: Work that's important to me | 7.87 ± 3.52 | |
| Item 6: Recreational activities | 8.54 ± 2.56 | |
| Item 7: Social activities | 9.02 ± 2.17 | |
| Item 8: Family role | 8.87 ± 2.48 | |
| Item 9: Comfort with relationships | 9.09 ± 2.16 | |
| Item 10: Comfort around others | 9.14 ± 1.95 | |
| HRQL | Item 1: Mobility | |
| EQ‐5D‐3L | No problems | 255 (74%) |
| Some problems | 90 (26%) | |
| Confined to bed | 0 (0%) | |
| Missing | 23 | |
| Item 2: Self‐Care | ||
| No problems | 300 (87%) | |
| Some problems | 45 (13%) | |
| Missing | 21 | |
| Item 3: Usual Activities | ||
| No problems | 228 (66%) | |
| Some problems | 106 (31%) | |
| Unable to do | 11 (3%) | |
| Missing | 23 | |
| Item 4: Pain/Discomfort | ||
| None | 246 (71%) | |
| Some pain | 91 (26%) | |
| Extreme pain | 9 (2%) | |
| Missing | 22 | |
| Item 5: Anxiety/Depression | ||
| None | 178 (51%) | |
| Moderate | 158 (46%) | |
| Extreme | 10 (3%) | |
| Missing | 22 |
Abbreviations: EQ‐5D, EuroQol‐5D‐3L; RNLI, Reintegration to Normal Living Index; SD, standard deviation.
Table B2.
Model Fit Indices: results from the measurement model and structural model of HRQL in soft‐tissue sarcoma (12‐months post‐op).
| Model or measure |
|
Sig | df | CFI | TLI | RMSEA | |
|---|---|---|---|---|---|---|---|
| Reintegration to Normal Living Index (RNLI) | 99.59 | 0.267 | 55 | 0.985 | 0.981 | 0.032 [0.024, 0.041] | |
| EuroQol‐5D‐3L (EQ‐5D‐3L) | 370.33 | 0.338 | 5 | 0.977 | 0.955 | 0.069 [0.046, 0.095] | |
| Measurement model | 238.42 | 0.330 | 103 | 0.978 | 0.975 | 0.037 [0.031, 0.044] | |
| Measurement model with covariate adjustment | 313.90 | 0.375 | 159 | 0.966 | 0.959 | 0.040 [0.034, 0.047] | |
| Structural model | 240.34 | 0.343 | 117 | 0.977 | 0.973 | 0.036 [0.030, 0.043] |
Abbreviations: CFI, comparative fit index; df, degrees of freedom; RMSEA, root mean square error of approximation; Sig, significance; TLI, Tucker–Lewis index.
Table B3.
Standardized path coefficients including direct and indirect effects.
| Item (topic) | Estimate | Std. Loading | Std. Error | Sig. | |
|---|---|---|---|---|---|
| Factor loadings | RNLI‐1 (Move around home) | 1.000 | 0.583 | — | — |
| RNLI‐2 (Move around community) | 1.234 | 0.716 | 0.132 | < 0.001 | |
| RNLI‐3 (Take trips) | 1.492 | 0.729 | 0.214 | < 0.001 | |
| RNLI‐4 (Self‐care needs) | 1.193 | 0.692 | 0.217 | < 0.001 | |
| RNLI‐5 (Work that's important to me) | 1.714 | 0.594 | 0.336 | < 0.001 | |
| RNLI‐6 (Recreational activities) | 1.603 | 0.775 | 0.261 | < 0.001 | |
| RNLI‐7 (Social activities) | 1.335 | 0.769 | 0.226 | < 0.001 | |
| RNLI‐8 (Family role) | 1.481 | 0.735 | 0.203 | < 0.001 | |
| RNLI‐9 (Comfort with my relationships) | 1.178 | 0.662 | 0.146 | < 0.001 | |
| RNLI‐10 (Comfort around other people) | 0.962 | 0.614 | 0.133 | < 0.001 | |
| RNLI‐11 (Deal with events as they happen) | 0.919 | 0.571 | 0.136 | < 0.001 | |
| EQ5D‐1 (Mobility) | 1.000 | 0.699 | — | — | |
| EQ5D‐2 (Self‐care) | 0.703 | 0.567 | 0.095 | < 0.001 | |
| EQ5D‐3 (Usual activities) | 1.449 | 0.795 | 0.135 | < 0.001 | |
| EQ5D‐4 (Pain) | 1.093 | 0.605 | 0.138 | < 0.001 | |
| EQ5D‐5 (Anxiety/depression) | 0.682 | 0.412 | 0.136 | < 0.001 | |
| Regressions | Pain → health perceptions | −0.254 | 0.275 | −0.084 | 0.006 |
| Pain → HRQL | −0.556 | 0.414 | −0.101 | < 0.001 | |
| Health perceptions → HRQL | 0.757 | 0.521 | 0.155 | 0.006 | |
| Indirect effect | 0.038 | 0.143 | 0.014 | < 0.001 | |
| Total effect | 0.749 | 0.557 | 0.129 | < 0.001 |
Abbreviations: EQ‐5D, EuroQol‐5D‐3L; RNLI, Reintegration to Normal Living Index.
Andersen N. J., Bergeron C., Turcotte R., and Körner A., “Health Perceptions and HRQL With Soft‐Tissue Sarcoma at 12 Months Post‐Op: Using the Wilson‐Cleary Model to Evaluate the Measurement Properties of the RNLI and EQ‐5D‐3L,” Journal of Surgical Oncology 132 (2025): 1288‐1295, 10.1002/jso.70101.
Data Availability Statement
The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Data Availability Statement
The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.