Stigma in Pediatric Cancer: An Exploratory Study of Osteosarcoma and Retinoblastoma in Guatemala, Jordan, and Zimbabwe.

PURPOSE: Stigma is an understudied barrier to health care acceptance in pediatric oncology. We sought to explore the stigma experience, including its impact on cancer treatment decision making, and identify strategies to mitigate stigma for patients with osteosarcoma and retinoblastoma in Guatemala, Jordan, and Zimbabwe. METHODS: Participants included caregivers, adolescent patients (age 12-19 years), and health care clinicians. A semistructured interview guide based on The Health Stigma and Discrimination Framework (HSDF) was adapted for use at each site. Interviews were conducted in English, Spanish, Arabic, or Shona, audio-recorded, translated, and transcribed. Thematic analysis focused on stigma practices, experiences, outcomes, drivers, mitigators, and interventions. RESULTS: We conducted 56 interviews (28 caregivers, 19 health care clinicians, nine patients; 20 in Guatemala, 21 in Jordan, 15 in Zimbabwe). Major themes were organized into categories used to adapt the HSDF to global pediatric cancer care. Themes were described similarly across all sites, ages, and diagnoses, with specific cultural nuances noted. Pediatric cancer stigma was depicted as an isolating and emotional experience beginning at diagnosis and including internalized and associative stigma. Stigma affected decision making and contributed to negative outcomes including delayed diagnosis, treatment abandonment, regret, and psychosocial fragility. Overcoming stigma led to positive outcomes including resilience, treatment adherence, pride, and advocacy. Identified stigma drivers and mitigators were linked to potential interventions. CONCLUSION: Participants describe a shared stigma experience that transcends geography, cultural context, age, and diagnosis. Stigma manifestations have the potential to impact medical decision making and affect long-term psychological outcomes. Stigma assessment tools and interventions aimed at stigma mitigation including educational initiatives and support groups specific to pediatric cancer should be the focus of future research.

Effects of mindfulness-based stress reduction combined with music therapy on pain, anxiety, and sleep quality in patients with osteosarcoma

Objectives: To evaluate the effects of mindfulness-based stress reduction (MBSR) combined with music therapy (MT) on clinical symptoms in patients with osteosarcoma. Methods: Patients diagnosed with osteosarcoma were assessed for eligibility. A total of 101 patients were ultimately randomized into the intervention and control groups. Both groups received routine care. Eight sessions of MBSR and MT psychotherapy were conducted in the intervention group, while the control group received no psychological intervention. Patients were assessed regarding pain, anxiety, and sleep quality at two distinct stages: before and after the intervention. Results: There were no significant differences in sociodemographic and clinical parameters between the intervention and control groups at baseline. The intervention program significantly alleviated psychological and physiological complications in patients with osteosarcoma. Specifically, the study revealed that 8 weeks of the combined MBSR/MT intervention effectively reduced pain and anxiety scores and improved the quality of sleep in patients. Conclusion: MBSR combined with MT significantly alleviated clinical symptoms, and could be considered a new, effective psychotherapeutic intervention for patients with osteosarcoma.

Effects of mindfulness-based stress reduction combined with music therapy on pain, anxiety, and sleep quality in patients with osteosarcoma.

OBJECTIVES: To evaluate the effects of mindfulness-based stress reduction (MBSR) combined with music therapy (MT) on clinical symptoms in patients with osteosarcoma. METHODS: Patients diagnosed with osteosarcoma were assessed for eligibility. A total of 101 patients were ultimately randomized into the intervention and control groups. Both groups received routine care. Eight sessions of MBSR and MT psychotherapy were conducted in the intervention group, while the control group received no psychological intervention. Patients were assessed regarding pain, anxiety, and sleep quality at two distinct stages: before and after the intervention. RESULTS: There were no significant differences in sociodemographic and clinical parameters between the intervention and control groups at baseline. The intervention program significantly alleviated psychological and physiological complications in patients with osteosarcoma. Specifically, the study revealed that 8 weeks of the combined MBSR/MT intervention effectively reduced pain and anxiety scores and improved the quality of sleep in patients. CONCLUSION: MBSR combined with MT significantly alleviated clinical symptoms, and could be considered a new, effective psychotherapeutic intervention for patients with osteosarcoma.

Health-Related Quality of Life and Survival Outcomes of Pediatric Patients With Nonmetastatic Osteosarcoma Treated in Countries With Different Resources.

PURPOSE: Health-related quality of life (HRQOL) improves throughout treatment of patients with nonmetastatic osteosarcoma. We compared HRQOL for patients in the United States and Chile treated on an international trial (OS99) with polychemotherapy and surgery, and we assessed the relationships among HRQOL measures, event-free survival (EFS), and overall survival (OS). MATERIALS AND METHODS: Patients with newly diagnosed, localized osteosarcoma and their parents completed three HRQOL instruments (PedsQL v.4, PedsQL Cancer v.3, and Symptom Distress Scale [SDS]). Data were collected at four time points throughout therapy. Repeated measures models were used to investigate the effect of treatment site on instrument scores. The log-rank test examined the impact of treatment site on survival outcomes, and Cox proportional hazards regression models evaluated baseline HRQOL measures as predictors of EFS and OS. RESULTS: Of 71 eligible patients, 66 (93%) participated in the HRQOL studies in the United States (n = 44) and Chile (n = 22). The median age was 13.4 years (range, 5 to 23 years). Clinical characteristics were similar between treatment sites. US patients reported better scores for physical ( P = .030), emotional ( P = .027), and school functioning ( P < .001). Chilean patients reported poorer scores for worry ( P < .001) and nausea ( P = .007). Patient and parent nausea scores were similar between patients treated in the United States and Chile by the end of therapy. Differences in symptom distress were not observed between the countries. Neither HRQOL measures nor treatment site were associated with EFS or OS. CONCLUSION: Although significant differences in HRQOL were observed between countries, outcomes were similar, and HRQOL measures were not associated with prognosis.

The Effect of Clown Intervention on Self-Report and Biomarker Measures of Stress and Fatigue in Pediatric Osteosarcoma Inpatients: A Pilot Study.

BACKGROUND: Pediatric cancer patients experience different psychological processes during hospitalization that may regulate the immune response and affect recovery and response to cancer treatment. In this study, we aimed to examine the feasibility of longitudinal testing of psychophysiological parameters of stress and fatigue in pediatric osteosarcoma patients hospitalized for chemotherapy submitted to clown intervention; and to investigate whether changes in the levels of biomarkers are associated with psychological stress and fatigue levels in these patients after the clown intervention. METHODS: A pretest-posttest quasi-experimental pilot study was conducted at the pediatric oncology inpatient unit in a comprehensive cancer care center in Brazil including children and adolescents with osteosarcoma hospitalized for chemotherapy. Eight saliva samples were collected, comprising 4 at baseline (pre-intervention) and 4 after the clown intervention (+1, +4, +9, and +13 hours post-awakening). Salivary cortisol, α-amylase (sAA), cytokines, and matrix metalloproteinase-9 (MMP-9) levels were determined using high-sensitivity enzyme-linked immunosorbent assay (ELISA) kits. Stress and fatigue were measured by Child Stress Scale-ESI and PedsQL Multidimensional Fatigue Scale respectively. Bivariate association analysis between stress and fatigue scores and biomarker levels were investigated using nonparametric statistics. Effect sizes were calculated for each outcome variable. RESULTS: Six pediatric osteosarcoma patients were enrolled with no missing data. No significant effects sizes were observed for psychophysiological outcomes. Effect sizes ranged from 0.54 (cortisol) to 0 (interleukin-1ß [IL-1ß]). Decreasing overall trends were observed for cortisol levels for all 6 pediatric osteosarcoma patients over time. In addition, a similar pattern of tumor necrosis factor-α (TNF-α) levels over time was found for all 6 patients. Patients with metastatic osteosarcoma showed a linear trend for a decrease in MMP-9 levels between 1 and 9 hours after the clown intervention and restoration to basal levels after 13 hours. CONCLUSIONS: The results of this pilot study suggest that it is feasible longitudinally measure psychophysiological outcomes in the pediatric osteosarcoma inpatients for chemotherapy. Clown intervention merits further study as a way to reduce stress as well as fatigue, since that the stress and cytokines measurements are feasible based on our work.

[Quality of life in patients with bone tumors, a comparison between different treatments]. / Calidad de vida en pacientes con tumores oseos, una comparacion entre diferentes tratamientos.

INTRODUCTION. Previously, amputation was the only treatment option for patients with malignant bone tumors. Due to technological, medical and surgical advances, the number of survivors and years of survival has been increasing, and thus, the interest in evaluating the impact of this disease on quality of life. OBJECTIVE. To evaluate the health related quality of life reported by patients with bone tumors undergoing different treatments (no surgery/amputation/salvage). MATERIAL AND METHODS. Patients (n = 85) with bone tumors over the age of 18, both sexes, from the Instituto Nacional de Rehabilitación of Mexico City were included, divided into three groups according to type of treatment. The study design was cross-sectional, descriptive of a nonrandom sample. Quality of life was assessed with the Inventory of Quality of Life and Health (InCaViSa). Data were analyzed using descriptive statistics, comparisons between patients with different treatments were evaluated with multivariate analysis of covariance and Sidak post hoc tests. RESULTS. Statistically significant differences were detected in six of the twelve areas of quality of life that are assessed by the scale: physical functioning, isolation, body perception, treatment attitude leisure time and daily life. Health related quality of life in the study group is best for those patients who received amputation compared with the other treatments, while patients limb salvage procedures are those with greater impairment.

Validation of the Brazilian version of the musculoskeletal tumor society rating scale for lower extremity bone sarcoma.

BACKGROUND: The Musculoskeletal Tumor Society (MSTS) rating scale is an English-language instrument used worldwide to assess functional evaluation of patients with musculoskeletal cancer. Despite its use in several studies in English-speaking countries, its validity for assessing patients in other languages is unknown. The translation and validation of widely used scales can facilitate the comparison across international patient samples. OBJECTIVES/PURPOSES: The objectives of this study were (1) to translate and culturally adapt the MSTS rating scale for functional evaluation in patients with lower extremity bone sarcomas to Brazilian Portuguese; (2) analyze its factor structure; and (3) test the reliability and (4) validity of this instrument. METHOD: The MSTS rating scale for lower limbs was translated from English into Brazilian Portuguese. Translations were synthesized, translated back into English, and reviewed by a multidisciplinary committee for further implementation. The questionnaire was administered to 67 patients treated for malignant lower extremity bone tumors who were submitted to limb salvage surgery or amputation. They also completed a Brazilian version of the Toronto Extremity Salvage Score (TESS). Psychometric properties were analyzed including factor structure analysis, internal consistency, interobserver reliability, test-retest reliability, and construct validity (by comparing the adapted MSTS with TESS and discriminant validity). RESULTS: The MSTS rating scale for lower limbs was translated and culturally adapted to Brazilian Portuguese. The MSTS-BR proved to be adequate with only one latent dimension. The scale was also found to be reliable in a population that speaks Brazilian Portuguese showing good internal consistency (Cronbach's alpha = 0.84) and reliability (test-retest reliability and interobserver agreement of 0.92 and 0.98, respectively). Validity of the Brazilian MSTS rating scale was proved by moderate with TESS and good discriminant validity. CONCLUSIONS: The Brazilian version of the MSTS rating scale was translated and validated. It is a reliable tool to assess functional outcome in patients with lower extremity bone sarcomas. It can be used for functional evaluation of Brazilian patients and crosscultural comparisons.

Assistência de enfermagem a pacientes portadores de osteossarcoma: um enfoque para o período de internação hospitalar

Este trabalho tem como tema a assistência de Enfermagem aos pacientes portadores de osteossarcoma no período de internação hospitalar e tem como objetivos minimizar o impacto causado pela amputação decorrente do osteossarcoma através da assistência de enfermagem sistematizada, descrever os principais aspectos fisiopatalógicos do osteossarcoma, identificar as principais necessidades dos clientes portadores de osteossarcomas e elaborar um plano assistencial sistematizado de enfermagem para clientes portadores de osteossarcoma. O Osteossarcoma é mais freqüente durante a adolescência, sua incidência é maior entre 15 e 25 anos e costuma atingir as extremidades dos ossos longos. Os clientes acometidos por osteossarcoma indicados para amputação, convivem com o estigma do câncer e dificuldade do convívio social que, para um jovem, torna-se decepcionante em virtude da mudança do estilo de vida decorrente dessa mutilação. Daí a necessidade da descrição e implementação da sistematização de conduta de enfermagem para ajudar o cliente a superar os problemas oriundos do tratamento, em especial a amputação, que requer orientações e cuidados específicos durante toda a fase de pré e pós-operatório. Ao rever o tema, tem-se em vista as orientações descritas em agente, ação e observação que objetivam os cuidados de enfermagem, além da orientação ao cliente na ocasião de alta que visa prevenir a infecção, a restrição de movimentos do membro amputado e a dor, demonstrando a importância da enfermagem na readaptação do cliente. Nosso interesse é que, com o desenvolver da sistematização, o cliente possa buscar o estímulo, participando ativamente de seu tratamento e, voltando, assim, à sua rotina de vida