Tese de mestrado. Engenharia Mecânica. Faculdade de Engenharia. Universidade do Porto. 1998

Although there are thousands of new spinal cord injury cases each year, length of stay in rehabilitation has significantly decreased, leaving individuals with SCI returning to the community unprepared. Empower SCI is a non-profit organization that aims to fix this gap by providing rehabilitation services to community-dwelling adolescents and adults with SCI. The outcome measures currently used at Empower SCI were assessed to determine if they were a good fit for the program based on their items, scoring system, psychometric properties, and effectiveness at capturing change. In addition, a new assessment measure, the SCI-QOL Resilience SF, was piloted with two participants in a case study format to capture an additional important change, resilience, at Empower SCI. The SCI-QOL Resilience Short Form captured significant change in resilience for one out of two participants. However, both participants shared that Empower SCI provided them with new resources to overcome obstacles to occupational participation and a more positive outlook on life after SCI. Recommendations for the continuation, discontinuation, or altered use of all assessment measures were made based on if they fit the needs of Empower SCI participants and the environment. With an improved data collection system, Empower SCI can demonstrate its positive outcomes to key stakeholders and continue expanding its program to new states and countries. / 2022-10-09T00:00:00Z

Introduction: There is proven therapeutic benefit in bariatric surgery for obese patients. Consequently the National Institute of Clinical Excellence UK has provided referral guidelines for bariatric surgery. Successful bariatric surgery will result in massive weight loss and ptotic skin, which can cause significant functional and psychological problems. As the number of cases of bariatric surgery increases, a corresponding number of massive weight loss patients will require plastic surgery. In this novel field of post massive weight loss surgery there is a lack of understanding of the demographics, physical symptoms and psychological health of this new group of patients. The tools to assess them are few and not validated, the patient pathway is disjointed and there is no consensus on standardised provision. Method: A prospective multicentre, observational study of outcomes in 100 patients undergoing bariatric and post massive weight loss plastic surgery at 2 clinical sites was performed. Each patient followed a standard operating protocol. This included undergoing a semi structured interview, completing five patient-report outcome measures, having anthropometric measurements and clinical photographs taken. Conclusion: This observational study identified key psychosocial themes prevalent in massive weight loss patients, during their weight loss journey. It identified there are no validated patient reported outcome measures available specific to this cohort of patients. This work led to the development of a new validated tool for massive weight loss body contouring.

Adolescents and young adults (AYAs, 15-39 years of age) with cancer face unique challenges. Efforts have been made to improve both care and outcomes for this population. Metrics to evaluate AYA cancer care efforts help to ensure that objectives and outcomes are being met. This thesis comprises 7 papers which explore system performance metrics for cancer care and control in AYAs. A scoping review introduces the topic and addresses the current state of indicator metrics for the AYA cancer population. The second paper extends this work and develops a consensus-based list of relevant indicators. The subsequent papers focus on further development of two of the identified indicators for implementation in Canada (identification of patient reported outcome measures (PROMS) for assessing distress; a referral indicator for oncofertility care). This thesis describes 14 indicators in 5 care areas. Two identified indicators were further developed to aid in implementation (“Proportion of AYA patients screened for distress with standardized AYA specific tools” and “Proportion of AYA patients who had fertility preservation discussion before treatment”). Criteria from the National Quality Forum (NQF) were used to assess commonly used PROMs for distress. It was found that although all PROMs had acceptable psychometric properties, only the “Impact of Cancer” scale of the CDS-AYA had strong content validity for AYA with cancer. For Oncofertility, the indicator “Proportion of cases attending a fertility consult visit ≤ 30 days from diagnosis of cancer” was recommended for use. Finally, factors associated with attending such a fertility consult were identified. Important factors for both men and women included: age at diagnosis, risk to fertility, year of diagnosis, treatment with radiation or chemotherapy, region of care, income and residential instability. The information presented in this thesis can be applied to national system performance initiatives to identify and implement metrics to monitor and evaluate cancer care in AYA. / Thesis / Doctor of Philosophy (PhD) / A person 15 to 39 years old with cancer will face many challenges. This is a time of life with many changes such as continuing schooling, getting married, starting a career, or starting a family. To make sure that young people with cancer are getting the best care, and that they have the best chance to achieve their goals and contribute to society, we need to measure what is important to this group. These measures can be used to compare hospitals, or changes over time to help make care better. This paper looks at what we already measure in this group, and what patients, researchers and healthcare workers think also should be measured to help provide the best care for these patients. Measures discussed in this paper could be used in programs to monitor the quality of care given to young people with cancer.

During recent decades, lumbar spinal stenosis (LSS) has become the most common indication for spine surgery, a change that coincides with a higher worldwide prevalence of overweight and obesity. Thus, surgical treatment of LSS in the overweight and obese population is common and increasing in scope. The overall aim of this thesis was to investigate whether body mass index (BMI) is related to the development of LSS, and whether BMI is linked to outcome after surgery for LSS. We further evaluated whether there are specific experiences of LSS from a patient perspective. Data were obtained for all patients registered in the Swedish Spine Register who had undergone surgery for LSS between January 1, 2006 and June 30, 2008. After adjusting for differences in baseline characteristics, patients with obesity showed both poorer results after surgery and a higher rate of dissatisfaction than patients with normal weight (odds ratio 1.73; 95% confidence interval, CI, 1.36-2.19). Furthermore, patients with obesity in the cohort reported modest weight loss at follow-up (2.0 kg; 95% CI, 1.5-2.4), and only 8% reported a clinical important weight loss 2 years after surgery. Our analysis of 389,132 construction workers, showed that overweight (incidence rate ratio, IRR 1.68; 95% CI, 1.54-1.83) and obesity (IRR 2.18; 95% CI, 1.87-2.53) were associated with an increased future risk in developing LSS when compared with patients with normal weight. To gain insight into the patients' perspective of LSS, we performed interviews with 18 patients who were on a waiting list for LSS surgery. The transcripts, analyzed with content analysis, revealed that living with LSS is a physical, mental and social challenge in which resources to cope with the condition are of major importance. In summary, obesity is associated with poorer results after surgery, and patients with obesity report modest weight loss during follow-up. In addition, obesity is associated with an increased risk to develop LSS. Our findings revealed that being a patient with LSS, naturally involves considerable suffering and pain, but it also implies being a person with his or her own resources who is able to cope with these adverse conditions.