The patient's subjective experience of disease is an increasing focus in health care delivery. Health-related quality of life (HRQoL) is defined as a “functional effect of a medical condition and its consequent treatment”; it is both self-reported and multi-dimensional. While functional outcome is well researched among the soft tissue sarcoma (STS) population, few studies have focused on HRQoL, which gives a broader understanding of the psychological, somatic, social and physical toll of cancer and its treatment from the patient's viewpoint. The biologic and anatomic heterogeneity of sarcomas are considerable, just as the treatments are diverse, we surmise that the indicators of patient HRQoL differ and are not captured in existing generic HRQoL tools for cancer. The study objectives were to explore the domains of HRQoL and functioning in adult patients diagnosed with extremity STS from the patient's perspective from active care through survivorship through qualitative inquiry, so as to form the basis for the development of a patient-derived, sarcoma-specific, preference based HRQoL tool. Study design is a sequential exploratory mixed methods study of patient experience in localized or metastatic adult extremity STS (2007 and 2017). The study was conducted at a high-volume sarcoma centre. Qualitative descriptive design was grounded in an integrated knowledge translation approach and aimed at identifying HRQoL domains through in-person and electronic focus groups, and individual semi-structured interviews in both English and French (N=28). The interview guide topics were selected based on existing knowledge about PROs and HRQoL life, including (a) impact of diagnosis on employment or acquisition of academic/vocational skills; (b) physical and psychological functioning; (c) symptom burden; (d) treatment preferences; (e) knowledge of and use of existing resources; (f) impact on family time and resources; and (g) overall experience. Data was analyzed using inductive thematic networks approach using the qualitative software N-Vivo 12. Codes were generated by 2 independent qualitative experts capturing key concepts of HRQoL that is impacted by STS. Basic themes were clustered into organizing themes, and merged into global domains. Attention was paid to deviant cases and within-group dynamics during focus group discussion analysis. Discrepancies or inconsistencies in coding were resolved in consensus meetings. Final sample size was determined when data saturation was reached and no new themes emerged. Qualitative reduction of identified items to reach a consensus framework was facilitated by a moderator during multi-disciplinary panel meetings comprised of sarcoma experts, patient partners, allied health staff and other stakeholders. Twenty-nine patients with biopsy-proven localized or metastatic STS of the extremity participated (69% lower extremity STS; mean age 56 years, 25% with local recurrence, 21% metastatic, 18% amputation). Inductive thematic network analysis revealed five function-related domains HRQoL for patients with STS. The functional domains were mapped to the Wilson & Cleary Model and experience domains were mapped to the Picker Institute's Through Patient's Eyes model. This is a critical step toward developing disease specific outcome measures. Patient-centered research is crucial to understanding the impact of surgery, adjuvant therapy and the associated complications for patients with extremity STS, and thereby improving the quality of care provision. This study offers a unique perspective on what domains and sub domains are most impactful on HRQoL and provides the basis for our on-going development of a disease-specific, preference-based HRQoL measure.
A huge commitment is required from patients and families who undergo a limb reconstruction procedure using the hexapod frame. This includes turning the struts on the frame, pin site care and intensive rehabilitation. Montpetit et al (2009) discovered that function, participation, engagement in regular activities of daily living is severely impacted during the hexapod lengthening period. Due to the long duration and burden for families, it is imperative that healthcare professionals understand the impact that the hexapod frame has on functional abilities and health related quality of life (HRQL). This project involved a retrospective review of prospectively collected data on function and HRQL during two periods of time: (1) when the hexapod frame is applied on the child's lower extremity and (2) when the lengthening phase is completed, and the hexapod frame is removed. Data from 38 children (mean age: 12 years SD 3.8) who completed lower extremity reconstruction using the hexapod frame and completed either or both the Pediatric Quality of Life Inventory 4.0 Generic Core Scale (PedsQL) and Pediatric Outcomes data Collection Instrument (PODCI) was included. Analysis included, standardized response means, the non-parametric Wilcoxon test and effect size calculation. A Wilcoxon signed rank test for those children who completed pre and post frame PODCI’;s revealed those scores were significantly greater once the hexapod frame was removed (Md=85.10, n=10) compared to during (Md=66.50, n=10) with a large effect size, r= 1.45. Similar, the PedsQL scores improved post frame removal (Md= 66.30, n=10) compared to during treatment (Md = 53.34, n=10), with a medium size effect, r= 0.62. All subtests improved once the frame was removed. This study provides essential insights into the burden of the hexapod frame for children and provides valuable information for all allied healthcare professionals targeted interventions for health domains. This study shows that children's function improves once the hexapod frame is removed. However, this study highlights the importance for all healthcare professional to address health domains for the duration of the hexapod procedure where the child scored lower e.g. sports and physical function, pain and comfort, happiness from the PODCI. The PedsQL identified lower mean scores in physical and emotional function.
As there is currently no evidenced-based and systematic way of prioritising people requiring JRS we aimed to develop a clinically relevant system to improve prioritisation of people who may require JRS. An important challenge in this area is to accurately assign a queue position and improve list management. To identify priority criteria areas eight workshops were held with surgeons and patients.
