RESUMEN
BACKGROUND: The aim of this study was to understand the experiences of young men with a diagnosis of testicular cancer (TC) using a narrative approach, with the intention of informing models of care and support in clinical services. METHODS: TC patients were recruited to participate in one of four focus groups examining their lived experiences from diagnosis. Focus groups were recorded and transcribed and analyzed using a narrative approach. RESULTS: A total of 4 focus groups were held from March to May 2019, involving 21 participants. Participants were currently on treatment (n = 2), < 2 years from treatment completion (n = 7), or > 2 years from treatment completion (n = 12). Two overarching meta-themes were identified: Negotiating Identity (comprising "recovery, repair and control"; "breaking the news"; "threats to fertility and virility"; "multiple masculinities") and Needing to Adjust (comprising "trauma and post-traumatic growth"; "facing vulnerability"; "managing to cope"; "secrecy vs. privacy"). Shared themes relating to environments for support, conversations about cancer, and time stress were also identified. CONCLUSIONS: Despite the significant cure rates for testicular cancer, the psychosocial needs of patients diagnosed with TC are paramount and potentially long-lasting. Improved clinical care for these patients includes exploration of both physical and psychosocial concerns over multiple timepoints. Opportunities for peer support and mentorship may be essential to support these vulnerable patients.
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Adaptación Psicológica , Grupos Focales , Neoplasias Testiculares , Humanos , Masculino , Neoplasias Testiculares/psicología , Neoplasias Testiculares/terapia , Adulto , Adulto Joven , Narración , Investigación Cualitativa , Apoyo SocialRESUMEN
A 40-year-old unmarried Brazilian woman, Ms A, received a diagnosis of papillary renal cell carcinoma (RCC) in February 2020; she underwent nephrectomy the following month. In August, she began to experience generalized pain with subsequent scans revealing metastatic disease to the supraclavicular lymph node, liver, and vagina. In October 2020, Ms A started first-line systemic combination treatment with nivolumab (Opdivo; 3 mg/kg) plus ipilimumab (Yervoy; 1 mg/kg) every 3 weeks for 4 doses, followed by nivolumab (3 mg/kg) every 2 weeks, to be taken for 2 years. In April 2021, follow-up testing revealed a partial response to therapy, and a complete response was evident in August 2021. Ms A was first screened for biopsychosocial distress by the supportive care team in October 2020, and she completed the Edmonton Symptom Assessment System (ESAS) evaluation.During her fourth cycle of treatment in October 2020, the patient was assessed with the ESAS. During her medical visits, Ms A also expressed concern regarding her physical symptoms and admitted frequent self-monitoring for signs of recurrence or progression. Her oncologist prescribed tramadol for pain and the supportive care team recommended increased engagement in physical activity. Upon further assessment, the patient reported a belief that her psychosocial symptoms, worry about recurrence or progression, and time spent self-monitoring were a normal part of her cancer experience.
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Carcinoma de Células Renales , Neoplasias Renales , Tramadol , Adulto , Carcinoma de Células Renales/tratamiento farmacológico , Femenino , Humanos , Ipilimumab/uso terapéutico , Neoplasias Renales/tratamiento farmacológico , Nivolumab/uso terapéutico , Dolor , Psicooncología , Tramadol/uso terapéuticoRESUMEN
PURPOSE: The revised Psychosocial Assessment Tool (PATrev) is a common family-level risk-based screening tool for pediatric oncology that has gained support for its ability to predict, at diagnosis, the degree of psychosocial support a family may require throughout the treatment trajectory. However, ongoing screening for symptoms and concerns (e.g., feeling alone, understanding treatment) remains underutilized. Resource limitations necessitate triaging and intervention based on need and risk. Given the widespread use of the PATrev, we sought to explore the association between family psychosocial risk, symptom burden (as measured by the revised Edmonton Symptom Assessment System (ESAS-r)), and concerns (as measured by the Canadian Problem Checklist (CPC)). METHODS: Families (n = 87) with children ≤ 18 years of age (M = 11.72, male: 62.1%) on or off treatment for cancer were recruited from the Alberta Children's Hospital. One parent from each family completed the PATrev and the CPC. Participants 8-18 years of age completed the ESAS-r. RESULTS: Risk category (universal/low risk = 67.8%, targeted/intermediate risk = 26.4%, clinical/high risk = 5.7%) predicted symptom burden (F[2, 63.07] = 4.57, p = .014) and concerns (F[2, 82.06] = 16.79, p < .001), such that universal risk was associated with significantly lower symptom burden and fewer concerns. CONCLUSION: Family psychosocial risk is associated with cross-sectionally identified concerns and symptom burden, suggesting that resources might be prioritized for families with the greatest predicted need. Future research should evaluate the predictive validity of the PATrev to identify longitudinal concerns and symptom burden throughout the cancer trajectory.
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Neoplasias , Alberta/epidemiología , Niño , Humanos , Masculino , Tamizaje Masivo , Oncología Médica , Padres , Evaluación de SíntomasRESUMEN
BACKGROUND: An increasing number of gastrointestinal cancer (GI) patients suffer from side effects of cancer treatment that can affect their mood states and quality of life. Despite its demonstrated effectiveness in female cancer patients, Supportive Expressive Group Therapy (SEGT) has not been tested in male cancer patients. The current study sought to examine the longitudinal effects of a professionally-led, men-only SEGT on mood states, coping, and quality of life (QoL) in male GI cancer patients. METHODS: A sample of male GI cancer patients (n = 31), at different stages of cancer treatment, was recruited from an ongoing, men-only biweekly GI cancer SEGT. Data were collected at baseline (before or near the beginning of group attendance) and at three months and six months follow-up. All study outcomes were patient-reported and included socio-demographic data as well as validated questionnaires: Profile of Mood States (POMS) for mood states, Functional Assessment of Cancer Therapy-General (FACT-G) for QoL, and Ways of Coping-Cancer Version (WOC) for coping. Linear mixed models were used to examine the change in outcomes over time. Effect sizes were estimated using Cohen's d. RESULTS: The Anxiety (p = .04; d = 0.70), Depression (p = .03; d = 0.93) and Anger (p = .04; d = 1.28) subscales of the POMS decreased between baseline and six months. Participants also reported improvements in coping through Distancing (distancing oneself from negative thoughts, being more accepting of the situation, and looking for positives) of the WOC (p = .04; d = 0.4) between baseline and six months. There was no change in any of the FACT subscales (QoL) over time. CONCLUSIONS: This is the first study to investigate the effects of a SEGT intervention in male cancer patients. Participation in the intervention was associated with improved mood states and coping in male GI cancer patients; however, there was no change in measures of QoL.
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Ansiedad/terapia , Depresión/terapia , Neoplasias Gastrointestinales/psicología , Satisfacción del Paciente , Psicoterapia de Grupo/métodos , Adaptación Psicológica , Adulto , Ansiedad/etiología , Depresión/etiología , Neoplasias Gastrointestinales/complicaciones , Neoplasias Gastrointestinales/terapia , Humanos , Estudios Longitudinales , Masculino , Persona de Mediana Edad , Evaluación de Resultado en la Atención de Salud , Calidad de Vida/psicología , Autoeficacia , Encuestas y CuestionariosRESUMEN
PURPOSE: Cancer-related biopsychosocial distress is highly prevalent across the cancer care continuum. The implementation of screening patients for biopsychosocial distress has become a standard of practice in cancer care. With the presence of COVID-19, clinical care has shifted from in-person care to virtual care in many instances. One of the realities of COVID-19 is the significant decrease in screening patients for biopsychosocial symptom burden. METHODS: Given that screening for distress has become an accreditation standard in many cancer programs, in the province of Alberta, Canada, all patients are screened for distress with every visit to the cancer centre. Given the presence of COVID-19, much of cancer care has shifted to being delivered virtually (through mediums such as Zoom). In this paper, we present pre- and post-COVID data on the frequency of distress screening and its impact on patient care. RESULTS: A review of pre- and post-COVID-19 screening for distress questionnaires revealed that patients who received virtual care were less satisfied in the areas of emotional support and received less resources and referrals to supportive care. CONCLUSION: The rapid integration of virtual care without the inclusion of a standardized distress screening tool was akin to a natural experiment, as two groups (virtual and in-person clinic patients) received different levels of care and interventions. Without the inclusion of distress screening, the clinical conversation around symptoms is less likely to occur and results in fewer referrals to best practices in supportive care services. Lessons learned about virtual cancer care without distress screening in the time of COVID-19 demonstrates significantly fewer patients being screened for distress and subsequently has resulted in less supportive care referrals. Going forward, we must find ways to ensure that virtual cancer care continues to support distress screening and best patient-centric care.
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COVID-19 , Neoplasias , Alberta , Detección Precoz del Cáncer , Humanos , Tamizaje Masivo , Neoplasias/diagnóstico , Neoplasias/terapia , SARS-CoV-2RESUMEN
RATIONALE: Head and neck cancer (HNC) patients and survivors are a particularly vulnerable group with disproportionately high levels of psychosocial distress. Untreated psychosocial distress among HNC patients has consistently been associated with poorer health and psychosocial outcomes. Screening for distress (SFD) allows health care providers to identify and monitor patient's distress, and when needed, to subsequently provide appropriate psychosocial supports that aim to reduce suffering and improve patients' overall well-being. However, despite mounting evidence for the benefits of SFD some oncology centers continue to neglect SFD in HNC patients and survivors, thereby depriving these patients of the opportunity to have their unmet psychosocial needs appropriately addressed. The present paper reviews SFD literature and explores ethical considerations in screening HNC patients and for distress. CONCLUSIONS: Screening HNC patients for distress and facilitating the alleviation of suffering are important steps in providing ethical care. HNC oncology administrators, surgical departments, and clinicians are urged to consider the implementation of SFD for HNC patients and to take the necessary steps in implementing SFD practices and psychosocial care.
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Neoplasias de Cabeza y Cuello/psicología , Tamizaje Masivo/métodos , Psicología/métodos , Ética , Femenino , Humanos , MasculinoRESUMEN
Background: Palliative care aims to improve suffering and quality of life for patients with life-limiting disease. This study evaluated an interdisciplinary palliative consultation team for outpatients with advanced cancer at the Tom Baker Cancer Centre. This team traditionally offered palliative medicine and recently integrated a specialized psychosocial clinician. Historic patient-reported clinical outcomes were reviewed. There were no a priori hypotheses. Methods: A total of 180 chart reviews were performed in 8 sample months in 2015 and 2016; 114 patients were included. All patients were referred for management of complex cancer symptomatology by oncology or palliative care clinicians. Patients attended initial interviews in person; palliative medicine follow-ups were largely performed by telephone, and psychosocial appointments were conducted in person for those who were interested and had psychosocial concerns. Chart review included collection of demographics, medical information, and screening for distress measures at referral, initial consult, and discharge. Results: A total of 51% of the patient sample were men, 81% were living with a partner, and 87% had an advanced cancer diagnosis. Patients were grouped based on high, moderate, or low scores for 5 symptoms (pain, fatigue, depression, anxiety, and well-being). High scores on all 5 symptoms decreased from referral to discharge. Pain and anxiety decreased in the moderate group. All 5 low scores increased significantly. Sleep, frustration/anger, sense of burdening others, and sensitivity to cold were less frequently endorsed by discharge. Conclusions: Patients who completed this interdisciplinary palliative consult service appeared to experience a reduction in their most severe symptoms. Visits to patients during existing appointments or having them attend a half-day clinic appears to have reached those referred. With interdisciplinary integration, clinicians are able to collaborate to address patient care needs. Considerations include how to further integrate palliative and psychosocial care to achieve additional benefits and ongoing monitoring of changes in symptom burden.
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Neoplasias/terapia , Evaluación de Resultado en la Atención de Salud , Cuidados Paliativos/métodos , Atención Dirigida al Paciente/métodos , Derivación y Consulta/organización & administración , Adulto , Anciano , Anciano de 80 o más Años , Instituciones de Atención Ambulatoria/organización & administración , Femenino , Humanos , Masculino , Oncología Médica/métodos , Persona de Mediana Edad , Neoplasias/diagnóstico , Neoplasias/psicología , Grupo de Atención al Paciente/organización & administración , Evaluación de Programas y Proyectos de Salud , Sistemas de Apoyo Psicosocial , Calidad de Vida , Índice de Severidad de la EnfermedadRESUMEN
BACKGROUND: Research indicates that cancer patients experience significant multifactorial distress during their journey. To address this, cancer centers are implementing Screening for Distress programs; however, little is known about the sustainability of these programs. This study sought to examine the sustainability of a Screening for Distress program in 2 cancer clinics 6 months post implementation. METHODS: A mixed-methods cross-sectional design was utilized. To determine if screening rates, screening conversations and appropriate interventions occurred and the charts of 184 consecutive patients attending the head and neck or neuro-oncology clinics over a 3 week period were reviewed. To examine the barriers and facilitators of sustainability, 16 semi-structured interviews with administrators, physicians, and nurses were conducted. RESULTS: Of the 184 charts reviewed, 163 (88.6%) had completed screening tools. Of these 163, 130 (79.8%) indicated that a conversation occurred with the patient about the identified distress as reported on the screening tool. Of the 89 (54.6%) charts where the need for an intervention was indicated, 68 (76.4%) had an intervention documented. Six oncologists, 7 nurses, and 3 administrators were interviewed, and 5 themes which influenced the sustainability of the program emerged: (1) attitudes, knowledge, and beliefs about the program; (2) implementation approach; (3) outcome expectancy of providers; (4) integration with existing practices; and (5) external factors. CONCLUSIONS: This study suggests that Screening for Distress was largely sustained, possibly due to positive attitudes and outcome expectancy. However, sustainability may be enhanced by formally integrating screening with existing practices, addressing potential knowledge gaps, and ensuring engagement with all stakeholder groups.
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Ansiedad/etiología , Personal de Salud/psicología , Tamizaje Masivo/métodos , Neoplasias/psicología , Evaluación de Programas y Proyectos de Salud/métodos , Estrés Psicológico/diagnóstico , Adulto , Instituciones de Atención Ambulatoria , Comunicación , Estudios Transversales , Atención a la Salud , Femenino , Humanos , Masculino , Persona de Mediana Edad , Neoplasias/terapia , Pacientes Ambulatorios , Investigación CualitativaRESUMEN
In medicine, referral to a medical oncology specialty is based on recent history, physical examination, pathology, surgery reports, imaging, blood work, and the patient's vital signs. By contrast, referral to a psychosocial specialist has typically been based on the patients expressed request for psychosocial support or the health care team's observation of the patient's limited adjustment or poor coping with the diagnosis, treatment, or end-of-life distress. These observations are usually based on clinical acumen not on metrics. In psychosocial oncology, by committing to the science of caring and relying on the use of standardized tools to screen for distress, the multidisciplinary cancer care team assess, communicate, and intervene on what is measured. That is, health care providers can begin to address the patients' identified concerns. Branding distress as the 6th vital sign and incorporating screening for distress into standard cancer practice can be an effective strategy to challenging the resistance in implementation of psychosocial oncology in cancer care institutions. Accreditation agencies are endorsing the need to assess patient distress and better manage symptoms of distress as part of routine and standardized patient care. While many international organizations and societies support the importance of screening, implementing screening for distress still has a long way to go to be operationalized in many cancer care programs. Screening for distress when implemented does, however, create an opportunity for psychosocial oncology to extend its reach into cancer care programs and institutions.
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Distinciones y Premios , Neoplasias/psicología , Neoplasias/terapia , Psicooncología/organización & administración , Adaptación Psicológica , Congresos como Asunto , Humanos , Internacionalidad , Tamizaje Masivo , Sociedades Médicas , Estrés Psicológico/diagnósticoRESUMEN
Consistent with the International Psycho-Oncology Society's (IPOS) vision and goals, we are committed to improving quality cancer care and cancer policies through psychosocial care globally. As part of IPOS's mission, upon entering "Official Relations" for a second term with the World Health Organization (WHO), IPOS has dedicated much attention to reaching out to countries, which lack formalized psychosocial care programmes. One of IPOS's strategies to accomplish this goal has been to bring psycho-oncology training programmes to low- and middle-income countries and regions. To this end, the IPOS Board approved a new position on the Board of Directors for a member from a low- to middle-income country (LMIC). The IPOS 2016 President's Plenary focused on challenges and opportunities that exist in growing and developing psychosocial oncology programmes worldwide. The plenary presentations highlight how IPOS and WHO have aligned their goals to help LMICs support cancer patients as an essential element of cancer and palliative care. IPOS country representatives are strongly supported in liaising with national health authorities and with WHO Country Representatives in LMICs. The plenary speakers discussed the role IPOS Federation has taken in building a global network of psychosocial leaders and the impact this had in assisting LMICs in meeting IPOS's psychosocial care objectives. The plenary highlighted the challenges of expanding psychosocial reach into these countries. One significant question remains: Can psychosocial guidelines be adapted to LMICs and regions?
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Oncología Médica/organización & administración , Neoplasias/psicología , Neoplasias/terapia , Psicooncología/organización & administración , Congresos como Asunto , Países en Desarrollo , Humanos , Relaciones Interprofesionales , Oncología Médica/normas , Pobreza , Psicooncología/normas , Sociedades Médicas/normasRESUMEN
PURPOSE: The purpose of this paper is to report the results of a negative randomized controlled trial, which piloted brief supportive-expressive therapy (SET) for partners of men with prostate cancer, and to discuss lessons learned for future clinical trials. METHODS: Partners of men with newly diagnosed, non-metastatic prostate cancer were randomized to SET (n = 45) or usual care (n = 32). SET involved six weekly group sessions emphasizing emotional expression, social support, and finding meaning in the cancer experience. Measures of mood disturbance, marital satisfaction, and social support were administered to both partners and patients at baseline, post-program, and at 3- and 6-month follow-up. RESULTS: There were no significant differences between SET and the control group for either patients or their wives on any outcome. Regardless of group membership, partners reported improvements in total mood disturbance (p = .011), tension (p < .001), anger (p = .041), confusion (p < .001), state anxiety (p = .001), and emotional support (p = .037), and patients reported improvements in tension (p = .003), emotional support (p = .047), positive interaction support (p = .004), and overall social support (p = .026). CONCLUSIONS: Compared to the natural course of recovery, SET did not improve psychosocial outcomes for either men with prostate cancer or their wives. Methodological challenges experienced in implementing this trial yield valuable lessons for future research, including designing interventions relevant to unique problems faced by specific groups, being closely guided by previous research, and the potential utility of screening for distress as an inclusion criteria in intervention trials.
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Neoplasias de la Próstata/psicología , Psicoterapia de Grupo/métodos , Parejas Sexuales/psicología , Anciano , Ansiedad/etiología , Ansiedad/prevención & control , Ansiedad/terapia , Consejo/métodos , Femenino , Humanos , Masculino , Persona de Mediana Edad , Terapias Mente-Cuerpo , Trastornos del Humor/etiología , Trastornos del Humor/prevención & control , Trastornos del Humor/terapia , Neoplasias de la Próstata/patología , Apoyo Social , Esposos/psicologíaRESUMEN
BACKGROUND: Human papillomavirus (HPV)-related cancers have been associated with different demographic profiles and disease characteristics than HPV-unrelated cancers in head and neck patients, but distress and other symptoms have not been compared. The aim of this study was to assess whether distress levels, fatigue, pain, anxiety, depression, and common psychological and practical problems differ between head and neck cancer patients with HPV-related vs. HPV-unrelated carcinomas (using oropharyngeal carcinoma (OPC) and non-OPC cancers as surrogates for HPV status). METHODS: Distress, depression, anxiety, fatigue, pain, and common problems were examined in 56 OPC and 90 non-OPC patients at 4 timepoints during the first year following diagnosis. Two-level hierarchical linear modeling was used to examine effects. RESULTS: The HPV-related OPC group was more likely to be younger (p = 0.05), Caucasian (p = 0.001), non-smokers (p = 0.01), earn more (p = 0.04), and present with more advanced stage (p < 0.0001). At baseline, OPC patients reported only higher pain scores (p = 0.01) than non-OPC patients. Total problems decreased more in the OPC group (p = 0.08) than the non-OPC group from baseline to 12-month follow-up. In both groups, scores on distress, depression, psychosocial problems, and practical problems decreased similarly over time. CONCLUSIONS: Despite a difference in the clinico-demographic characteristics of HPV-related vs. HPV-unrelated patients, only baseline pain levels and total problems over time differed between the two groups.
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Carcinoma de Células Escamosas/psicología , Neoplasias de Cabeza y Cuello/psicología , Neoplasias Orofaríngeas/psicología , Estrés Psicológico/epidemiología , Adulto , Anciano , Anciano de 80 o más Años , Carcinoma de Células Escamosas/epidemiología , Carcinoma de Células Escamosas/patología , Femenino , Neoplasias de Cabeza y Cuello/complicaciones , Neoplasias de Cabeza y Cuello/epidemiología , Neoplasias de Cabeza y Cuello/patología , Humanos , Masculino , Persona de Mediana Edad , Estadificación de Neoplasias , Neoplasias Orofaríngeas/epidemiología , Neoplasias Orofaríngeas/patología , Papillomaviridae/fisiología , Infecciones por Papillomavirus/complicaciones , Infecciones por Papillomavirus/epidemiología , Infecciones por Papillomavirus/psicología , Estudios Retrospectivos , Índice de Severidad de la Enfermedad , Estrés Psicológico/patología , Adulto JovenRESUMEN
BACKGROUND: Although a number of accreditation agencies and professional societies recommend routine screening for distress (SFD) for patients with cancer, it has been integrated very slowly into clinical practice. OBJECTIVES: This evaluation investigated the impact of a large-scale SFD intervention on patients' quality of life, symptom reports, and psychosocial well-being. The SFD intervention involved (1) completion of the SFD tool by patients, (2) discussion between patient and provider about the concerns indicated, and (3) provision of appropriate assessments/interventions based on priority concerns. PATIENTS AND METHODS: This quality improvement work included a pre-evaluation and postevaluation of the impact of implementation on patients' well-being. Patients in cohort 1 (N=740) were surveyed before implementation, whereas patients in cohort 2 (N=534) were surveyed 10 months after the implementation at 17 clinics province-wide. As part of the implementation, providers received training on assessing and responding to patient priority concerns with the standardized tool. RESULTS: No differences were seen in total score of quality of life between the cohorts. Fewer patients in cohort 2 than in cohort 1 reported health problems, including tiredness, drowsiness, poor appetite, nausea, anxiety, and poor well-being. Similarly, significantly fewer patients in cohort 2 endorsed problems relating to emotional, practical, informational, spiritual, social, and physical aspects of well-being. CONCLUSIONS: Results showed significantly improved psychological and physical symptoms and psychosocial well-being after routine SFD was implemented, suggesting that a large-scale SFD intervention is beneficial for patients when it is integrated into existing clinical practice and community resources.
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Neoplasias/complicaciones , Neoplasias/psicología , Calidad de Vida/psicología , Estrés Psicológico/diagnóstico , Estrés Psicológico/etiología , Estrés Psicológico/psicología , Femenino , Humanos , Masculino , Persona de Mediana EdadRESUMEN
The International Psycho-oncology Society (IPOS) has just celebrated its 30th anniversary. The growth of psychosocial oncology has been exponential, and this relatively new field is becoming a core service that focuses on prevention, reducing the burden of cancer, and enhancing the quality of life from time of diagnosis, through treatment, survivorship, and palliative care. Looking back over the past 30 years, we see that cancer care globally has evolved to a new and higher standard. Today, 'cancer care for the whole patient' is being accomplished with an evidence-based model that addresses psychosocial needs and integrates psycho-oncology into the treatment and care of patients. The President's Plenary Session in Lisbon, Portugal, highlighted the IPOS Mission of promoting global excellence in psychosocial care of people affected by cancer through our research, public policy, advocacy, and education. The internationally endorsed IPOS Standard of Quality Cancer Care, for example, clearly states the necessity of integrating the psychosocial domain into routine care, and that distress should be measured as the sixth vital sign after temperature, blood pressure, pulse, respiratory rate, and pain. The plenary paper also discussed the global progress being made in Europe, North America, and Australia in providing quality cancer care for the whole patient. Collaborative partnerships between IPOS and organizations such as the European Partnership Action Against Cancer and the World Health Organization are essential in building capacity for the delivery of high-quality psycho-oncology services in the future.
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Oncología Médica/organización & administración , Neoplasias/psicología , Neoplasias/terapia , Psicoterapia , Australia , Europa (Continente) , Humanos , América del Norte , Sociedades MédicasRESUMEN
Cancer is the primary underlying condition for most Canadians who are provided Medical Assistance in Dying (MAID). However, it is unknown whether cancer patients who are provided MAID experience disproportionally higher symptom burden compared to those who are not provided MAID. Thus, we used a propensity-score-matched cohort design to evaluate longitudinal symptom trajectories over the last 12 months of patients' lives, comparing cancer patients in Alberta who were and were not provided MAID. We utilized routinely collected retrospective Patient-Reported Outcomes (PROs) data from the Edmonton Symptom Assessment System (ESAS-r) reported by Albertans with cancer who died between July 2017 and January 2019. The data were analyzed using mixed-effect models for repeated measures to compare differences in symptom trajectories between the cohorts over time. Both cohorts experienced increasing severity in all symptoms in the year prior to death (ß from 0.086 to 0.231, p ≤ .001 to .002). Those in the MAID cohort reported significantly greater anxiety (ß = -0.831, p = .044) and greater lack of appetite (ß = -0.934, p = .039) compared to those in the non-MAID cohort. The majority (65.8%) of patients who received MAID submitted their request for MAID within one month of their death. Overall, the MAID patients did not experience disproportionally higher symptom burden. These results emphasize opportunities to address patient suffering for all patients with cancer through routine collection of PROs as well as targeted and early palliative approaches to care.
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This study examined the benefits of incorporating screening for distress as a routine part of care for patients with head and neck and neurologic cancers in a tertiary cancer center. Using a comparative 2-cohort pre-post implementation sequential design, consecutive outpatients with head and neck and neurologic cancers were recruited into 2 separate cohorts. Cohort 1 included patients attending clinics during April 2010, before the implementation of the screening program. The program was then implemented and patients completed the Screening for Distress Minimum Dataset (the Edmonton Symptom Assessment System [ESAS] and the Canadian Problem Checklist [CPC]) at each clinic visit. Cohort 2 included patients attending clinics during March 2011. Consenting patients completed screening and outcome measures (ESAS, CPC, and either the Functional Assessment of Cancer Therapy-Brain or the Functional Assessment of Cancer Therapy-Head and Neck). A total of 146 patients (78 head and neck and 68 neurologic) provided data for Cohort 1, and 143 (81 head and neck and 62 neurologic) provided data for Cohort 2. Compared with Cohort 1, patients with neurologic cancers in Cohort 2 reported significantly higher scores on the Functional Assessment of Cancer Therapy: General total and emotional quality of life subscale; fewer high scores (≥ 4) on the ESAS breathlessness item; and fewer problems with fears/worries, frustration/anger, finding meaning in life, and worry about friends/family. Head and neck patients in Cohort 2 reported significantly higher emotional quality of life and fewer problems with eating and weight than those in Cohort 1. Although no definitive causal attributions can be made, patients exposed to routine screening for distress reported better well-being and fewer emotional, physical, and practical problems than historical controls.
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Pruebas Diagnósticas de Rutina , Neoplasias de Cabeza y Cuello/complicaciones , Neoplasias del Sistema Nervioso/complicaciones , Estrés Psicológico/diagnóstico , Estrés Psicológico/etiología , Adulto , Anciano , Estudios de Cohortes , Pruebas Diagnósticas de Rutina/métodos , Femenino , Humanos , Masculino , Persona de Mediana Edad , Factores de RiesgoRESUMEN
BACKGROUND: This randomized controlled trial examined the impact of an online routine screening for distress program on physical symptoms and common psychosocial and practical problems in lung cancer outpatients. METHOD: Patients were randomly assigned to either the minimal screening group (the Distress Thermometer plus usual care); full screening group (Distress Thermometer, Canadian Problem Checklist (CPC), Pain Thermometer, Fatigue Thermometer, and the Psychological Screen for Cancer Part C, with a personalized report summarizing concerns); or triage (full screening plus option of personalized phone triage). Outcomes included pain, fatigue and psychosocial, practical and physical problems. Patients were reassessed 3 months later. RESULTS: A total of 549 lung patients completed baseline measures (89% of eligible patients) and 65.9% were retained at 3 months. At 3 months follow-up, significantly fewer patients in the triage group (32.1%) reported pain compared with the minimal screening group (49.6%), but the triage and full screening groups were not significantly different from one another. Patients in the triage group reported fewer problems with coping compared with the minimal and full screening groups and fewer problems with family conflict compared with the minimal screening group. Full screening patients reported fewer problems with breathlessness compared with the minimal screening group. No differences were found among groups in fatigue. Referrals were not associated with changes in outcomes over time. CONCLUSIONS: Routine screening for distress followed by personalized triage resulted in the most benefit for lung patients, with fewer fully screened and triaged patients reporting physical symptoms and psychosocial problems than those only minimally screened.
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Fatiga , Neoplasias Pulmonares/psicología , Tamizaje Masivo/métodos , Dolor , Estrés Psicológico/diagnóstico , Adaptación Psicológica , Adulto , Anciano , Canadá , Femenino , Estudios de Seguimiento , Humanos , Masculino , Persona de Mediana Edad , Pacientes Ambulatorios , Participación del Paciente , Factores Sexuales , Estrés Psicológico/prevención & control , Estrés Psicológico/terapia , Resultado del Tratamiento , Triaje/métodosRESUMEN
PURPOSE: Although research has indicated a diagnosis of cancer is most often distressing for patients and their families, few studies have examined which patients access resources to manage distress or how distress levels affect resource utilization. This study explored psychosocial and supportive care resource utilization in a large cancer population at a Canadian tertiary cancer centre over a 12-month period in a usual care setting. METHODS: Patients who were new to the Tom Baker Cancer Centre completed the Distress Thermometer, the Pain and Fatigue Thermometers, the Psychological Screen for Cancer (Part C) that measures anxiety and depression, self-report questions on resources accessed and a demographic form at baseline, 3, 6 and 12 months. No feedback or specific triage to services was provided in order to observe usual care practices. RESULTS: A total of 714 patients provided baseline data with 505 retained at 12 months. Twenty-four percent indicated they accessed at least one service (e.g. individual counselling, nutritionist or resource social worker) over the 12 months. Patients who were older, less educated and with lower income were less likely to access services. People who reported higher symptom burden were more likely to access services at each time point. CONCLUSIONS: Overall levels of access of psychosocial services were relatively low in this population and varied by socio-demographic variables and symptom burden. Routine monitoring of psychosocial, practical and physical concerns is a potential strategy for targeting individuals who may require additional information or support in accessing available services to manage their concerns.
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Consejo/estadística & datos numéricos , Recursos en Salud/estadística & datos numéricos , Neoplasias/psicología , Terapia Nutricional/estadística & datos numéricos , Aceptación de la Atención de Salud/psicología , Estrés Psicológico/diagnóstico , Adulto , Anciano , Canadá , Femenino , Humanos , Estudios Longitudinales , Masculino , Tamizaje Masivo , Persona de Mediana Edad , Centros de Atención TerciariaRESUMEN
BACKGROUND: As the concept of distress as the 6th vital sign gains strength in cancer care, research on the experience of patients is critical. This study longitudinally examined patients' physical and psychosocial concerns over the year following diagnosis. METHODS: Between July 2007 and February 2008, patients attending a large tertiary cancer centre were recruited to participate in a study examining their levels of distress, pain, fatigue, depression and anxiety over a year. RESULTS: A total of 877 patients provided baseline data with 620, 589 and 505 retained at 3, 6 and 12 months, respectively. Overall, levels of distress, depression and anxiety decreased significantly over the study period. No significant changes were found in levels of pain or fatigue. Demographics (being unmarried) and medical interventions (particularly having radiation therapy) predicted persistent distress, anxiety and depression, whereas receiving psychosocial support predicted decreased levels of distress, anxiety and depression. Some patients reported continued clinical levels of distress (29%), pain (19%) and fatigue (40%) 12 months post diagnosis. DISCUSSION: For some people, distress, depression, and anxiety may be transient and decrease over time, but for others they may be sustained. Pain and fatigue may remain present in many cancer patients. There is a need to modify current clinical practice to facilitate the appropriate assessment and management of distress.
Asunto(s)
Ansiedad/epidemiología , Depresión/epidemiología , Fatiga/epidemiología , Neoplasias/psicología , Dolor/epidemiología , Estrés Psicológico/epidemiología , Adaptación Psicológica , Adulto , Anciano , Ansiedad/diagnóstico , Ansiedad/psicología , Canadá/epidemiología , Depresión/diagnóstico , Depresión/psicología , Fatiga/diagnóstico , Fatiga/psicología , Femenino , Humanos , Estudios Longitudinales , Masculino , Persona de Mediana Edad , Morbilidad , Neoplasias/diagnóstico , Neoplasias/epidemiología , Dolor/diagnóstico , Dolor/psicología , Prevalencia , Escalas de Valoración Psiquiátrica , Análisis de Regresión , Factores de Riesgo , Apoyo Social , Factores Socioeconómicos , Estrés Psicológico/diagnóstico , Estrés Psicológico/psicologíaRESUMEN
This analysis examined demographic and medical factors associated with continuous distress in the year following cancer diagnosis. Patients completed the Distress Thermometer, Fatigue and Pain Thermometers, and anxiety and depression measures, at baseline, 3-, 6-, and 12 months. A total of 480 patients were grouped into three trajectories for distress, pain, fatigue, anxiety, and depression. Logistic regression analyses were conducted to determine risk factors associated with each symptom pattern. Females were more likely to report continuous distress. Predictors of the remaining outcomes included younger age; a diagnosis of head and neck, gastrointestinal, or prostate cancer; and receipt of chemotherapy and radiation therapy. By identifying risk factors for continuous distress, interventions can be implemented more efficiently and targeted to those who are at an elevated risk.