Access to Psychosocial Oncology Services

Key findings

Measure	Desired Direction	As of this Report
Percentage of referred cancer patients seen within 14 days for registered dietitian services
Percentage of head and neck cancer patients seen by a registered dietitian prior to or within 2 weeks of beginning curative chemotherapy or radiation treatment
Percentage of referred cancer patients seen within 14 days for social work services
See Methodology and Approach to find out how the ratings are calculated.

In 2016, 83% of cancer patients who had a referral date for nutrition therapy services saw a dietitian at a regional cancer centre in Ontario within 14 days of their referral. This nearly meets Cancer Care Ontario’s goal of 85%.

Sixty percent (60%) of head and neck cancer patients in 2016 received dietitian services at a regional cancer centre, either before their treatment or within 14 days of receiving curative radiation and/or chemotherapy. This is below Cancer Care Ontario’s program target of 80%.

In 2016, 86% of cancer patients who had a referral date for social work services saw a social worker at a regional cancer centre in Ontario within 14 days of their referral. This meets Cancer Care Ontario’s goal of 85%.

Timely access to psychiatry and psychology is affected by a lack of staff availability. There is significant regional variation in access to psychiatry and psychology services for cancer patients across the province.

What is psychosocial oncology?

In my words I feel privileged to receive the quality of cancer care especially living close to a large centre - not everyone has that opportunity. That having been said, it's very important that everyone with cancer be given equitable care regardless what part of the country they live in. Everyone is entitled to the best health care and treatment and that not be based on residence. Anonymous Patient/Family Advisor

Psychosocial oncology (PSO) is the interprofessional specialty concerned with understanding and treating the social, practical, psychological, emotional, spiritual, functional and quality-of-life impact that cancer has on patients and their families. PSO care spans from prevention, screening, diagnosis and treatment, through survivorship and end-of-life care.¹

Core disciplines of PSO at Cancer Care Ontario include psychiatry, psychology, social work, occupational therapy, physiotherapy, dietitian services and speech language pathology.

Other disciplines that may be included in PSO programs include spiritual care providers, mental health nurses and medical psychotherapists.

How can we measure patient access to PSO services?

The Psychosocial Oncology Program at Cancer Care Ontario supports timely access to high-quality PSO care to improve the quality of life of patients. The program has developed a measurement plan that evaluates the access to, and the effectiveness of, psychosocial support services for oncology patients across the province. As a starting point, the program focuses on measuring access to dietitians for patients identified as having a need for nutritional intervention. In the last year, the program added measuring access to social workers for patients referred to social work service, and the availability of timely access to psychiatry and psychology within the cancer centre or hospital.

The Ambulatory Oncology Patient Satisfaction Survey (AOPSS) measures the patient experience regarding the information, communication and education domains. With growing work and interest related to the sexual health needs of patients, this year the PSO Program is highlighting the AOPSS indicator related to the provision of sexual health information. For more information on the AOPSS, see Person-Centred Care and Patient Experience with Outpatient Cancer Care.

What do the results show?

Most cancer patients referred for dietitian services are seen within 14 days of referral, but fewer head and neck cancer patients are seen either before their treatment or within the target of 14 days (Figures 1 and 2).

• In 2016, 82% of cancer patients with a referral date for dietitian services saw a registered dietitian within 14 days, nearly meeting Cancer Care Ontario’s goal of 85%.
• There are regional differences in the wait time data for dietitians. Some reasons for this could include different staffing ratios and different models of service delivery. The PSO Program will work with stakeholders at many levels including a CCO-sponsored Community of Practice for Dietitians to address and resolve these issues.
• To determine appropriate wait times to registered dietitians and social workers, an expert panel composed of registered dietitians, social workers, PSO experts, and patient and family advisors was convened. Based on expert consensus, the panel concluded that 85% of all cancer patients referred to dietitian or social work services should be seen within 2 weeks of referral to first consultation. The 85% target allows for delays due to circumstances around the patient preference or the clinic (e.g. a patient preference on whether they’d like to meet with a dietitian).
• Sixty percent (60%) of head and neck cancer patients saw a registered dietitian prior to or within 2 weeks of curative chemotherapy or radiation treatment in 2014. This has remained relatively unchanged over the last three years.
• Cancer Care Ontario will work with multiple stakeholders including key individuals within the Head and Neck Program to identify possible barriers to head and neck patients receiving timely dietitian services.
• The PSO Program will work with stakeholders at many levels including a CCO-sponsored Community of Practice for Dietitians to address and resolve these issues.

Eighty-six percent (86.4%) of cancer patients referred for social work services are seen within 14 days of referral, which meets the wait time target (Figure 3). Access to psychiatry and psychology services varies significantly across the province (Figures 4 and 5).

• In 2016, 86% of cancer patients who had a referral date for social work services saw a social worker at a regional cancer centre in Ontario within 14 days of their referral. Although the target is met provincially, access to social work varies significantly among the cancer centres across the province.
• There are regional differences in the wait time data for social workers. This could be due to different staffing ratios and different models of service delivery. The PSO Program will work with stakeholders at many levels including a CCO-sponsored Community of Practice for Anxiety and Depression to address and resolve these issues.
• In November 2016, the PSO Program surveyed all cancer centres to assess if patients had access to psychiatry and psychology services. Figures 4 and 5 highlight the regional availability of timely services from psychiatry and psychology. To be included on the map as a psychiatrist or psychologist in the community, the practitioner would have to have expertise in cancer, a partnership relationship with the cancer centre and timely availability.
• Of the 14 regional cancer centres, four have no timely access to psychiatry within either the cancer centre or the hospital. This includes a large section of Northern Ontario as well as Southwestern and Southeastern Ontario.
• For psychology, there is even less access across the province. Nine of 14 cancer centres have no timely access to psychologists.

Less than half of respondents to the AOPSS found they had enough information about changes in sexual activity (Figures 6 and 7).

• Patients who responded to the AOPSS indicated they did not get enough education about possible changes in sexual activity that might result from their cancer diagnosis or treatment.
• Less than half of patients (approximately 47%) stated they received enough information and that varied by type of cancer, ranging from 35% of hematology cancer patients stating their information on sexual activity was sufficient compared to 68% of prostate/testicular cancer patients (Figure 6).
• A higher percentage of males (50%) than females (43%) stated they received enough information about possible changes in their sexual activity (Figure 7).

Why is this important to patient care?

Timely access to specialized dietitian services improves patient outcomes.

• Early nutritional intervention is important for head and neck cancer patients undergoing radiation therapy or concurrent chemotherapy/radiation. This allows dietitians to be proactive in supporting a patient’s nutritional needs.
• The Program in Evidence-Based Care’s The Management of Head and Neck Cancer in Ontario: Organizational and Clinical Practice Guideline Recommendations indicates that registered dietitians should be key members of the core healthcare team, which collectively is “responsible for the assessment, treatment, planning, management, survivorship, and rehabilitation” of the patient with head and neck cancer¹.
• In a recent study evaluating the prevalence and influence of malnutrition among head and neck cancer patients, it was found that 36% of head and neck patients are malnourished before treatment. This results in higher scores for fatigue, appetite loss, nausea and vomiting².
• Early nutrition intervention for head and neck cancer patients prior to receiving radiation therapy or concurrent chemotherapy/radiation is associated with minimizing weight loss and deterioration in nutritional status and reducing symptoms (such as grade 1 & 2 anorexia, nausea, vomiting, dry mouth and taste distortion). It is also linked to increasing energy and protein intake, quality-of-life measures, performance status and physical functioning^2,3,4. Weight loss is significantly associated with deterioration in the quality of life, physical and social functioning, social eating and social contact⁵.

Cancer patients frequently have dietary, emotional, physical, functional and occupational concerns related to their treatment and resulting symptoms.

• Regional cancer centres report that patient need frequently exceeds resources, and that patient access to specialized psychosocial services can be affected as a result. By measuring wait times, the PSO Program aims to measure patient access to psychosocial services.
• Social work has a unique role that can support the patients’ emotional, social, psychological, spiritual and functional concerns of cancer. In addition to the physical and emotional difficulties a cancer diagnosis can bring, social workers often play a very important role in supporting patients and their families to address the financial burden that can occur while a person is undergoing or recovering from treatment⁶.
• Emotional distress is common in the cancer experience and sometimes is a consequence of cancer treatment⁷. Depression, for example, is the most important psychiatric syndrome seen in cancer patients; estimates suggest about 25% of cancer patients will suffer from clinically significant depressive symptoms, and these may affect adherence to cancer treatment, physical health outcomes and quality of life, and are a major factor associated with suicide in cancer^8,9,10,11,12. Other outcomes of concern include anxiety (including extreme recurrence fears), relationship problems, body image disturbances, sexual dysfunction and problems with substance abuse and addiction^3,13.
• Psychiatrists have expertise in diagnosing these difficulties, and the psychotherapy and pharmacotherapy of these conditions; psychologists in diagnosis, psychometric and neuropsychological testing, and cognitive remediation for brain fog associated with chemotherapy and psychotherapy.
• Both psychiatrists and psychologists may be involved in safety assessments including suicide and capacity assessments, running coping skills groups and the teaching of frontline oncology staff and supervision of other PSO specialists. Finally, both are often involved in conducting collaborative health-related quality-of-life research. Having prompt access to the services of these specialized clinicians can reduce suffering, improve quality of life, reduce the likelihood of suicide and treatment nonadherence, and possibly improve health outcomes^6,14.

Access to sexual health information and resources can improve patient quality of life.

• The diagnosis and treatment of cancer often is associated with significant sexual dysfunction¹⁰. Sexuality may be affected by changes in appearance, physical side effects (e.g. pain, erectile dysfunction, vaginal dryness etc.), and emotional and relationship changes that occur because of treatment or the diagnosis itself. Across disease sites, estimates of sexual dysfunction after cancer treatment range from 40% to 100%¹⁰.
• To date, there is little guidance available for healthcare providers on how to address sexual dysfunction in cancer patients. To address this gap, the PSO Program is working to develop a guideline that will inform healthcare practitioners of effective interventions for addressing sexual dysfunction in cancer patients and survivors. Additionally, the program maintains a Sexual Health in Cancer Community of Practice, which meets quarterly by teleconference and occasionally in person. It aims to address other challenges that impede the incorporation of sexual health into cancer care, and its ultimate goal is to improve the experience for patients, survivors and their partners.
• The Patient Education Program is gathering data on the quantity and quality of information that patients receive about sexuality to inform potential quality improvement initiatives. Historically, sexual concerns have not been explicitly addressed by clinicians, but there is a growing awareness of the importance of identifying sexual health issues and supporting people with sexual health information, education and psychosocial support to enhance their quality of life.

Next steps

The PSO Program will continue to collect wait time information for PSO services to improve the quality of life of patients through access to high-quality, timely PSO services. Next year, the Program will continue to focus on improving access to services and data quality for assessing psychiatry, psychology and cancer rehab services.

The program also will continue to develop a comprehensive measurement plan and quality indicators (beyond wait times) to improve access. This includes measuring the availability of occupational therapy, physiotherapy and speech language therapy, as well as other rehabilitation programs such as the availability of services for group programing or services that treat lymphedema.

In collaboration with partners, the program will make recommendations for the delivery of PSO services in Ontario that ensure equitable, comprehensive care across the province. Furthermore, it will lead to the development of PSO guidelines to improve the patient experience through establishing PSO services that are standardized across the province. This will be done through the regional adoption of evidence-based guidelines and through support for sexual health, nutrition therapy, and depression and anxiety, and communities of practice that create a forum for collaboration, knowledge transfer and professional development related to these areas of service delivery.

View Notes

1. Gilbert R, Devries-Aboud M, Winquist E, Waldron J, McQuestion M, and the Head and Neck Disease Site Group. The management of head and neck cancer in Ontario: organizational and clinical practice guideline recommendations [Internet]. Toronto: Cancer Care Ontario; 2009. Available from: https://cancercare.on.ca/common/pages/UserFile.aspx?fileId=58592.
2. Capuano G, Gentile PC, Bianciardi F, Tosti M, Palladino A, Di Palma M. Prevalence and influence of malnutrition on quality of life and performance status in patients with locally advanced head and neck cancer before treatment. Support Care Cancer. 2010; 18:433–437.
3. Isenring EA, Capra S, Bauer JD. Nutrition intervention is beneficial in oncology outpatients receiving radiotherapy to the gastrointestinal or head and neck area. British Journal of Cancer. 2004; 91:447–452. doi:10.1038/sj.bjc.6601962
4. Ravasco P, Monteiro-Grillo I, Marque Vidal P, Camilo ME. Impact of nutrition on outcome: a prospective randomized controlled trial in patients with head and neck cancer undergoing radiotherapy. Head Neck. 2008; 27(8):659–68.
5. Langius JAE, van Dijk AM, Doornaert P, Kruizenga HM, Langendijk JA, Leemans CR, et al. More than 10% weight loss in head and neck cancer patients during radiotherapy is independently associated with deterioration in quality of life. Nutrition and Cancer. 2013; 65(1):76–83. doi: 10.1080/01635581.2013.741749
6. Nelson C. The financial hardship of cancer in Canada: A literature review. (2010). Manitoba: Canadian Cancer Society.
7. Carlson LE, Waller A, Mitchell AJ. Screening for distress and unmet needs in patients with cancer: review and recommendations. Journal of Clinical Oncology. 2012:JCO. 2011.39. 5509.
8. Walker J, Holm Hansen C, Martin P, Sawhney A, Thekkumpurath P, Beale C, et al. Prevalence of depression in adults with cancer: a systematic review. Annals of Oncology. 2013; 24(4): 895-900.
9. DiMatteo MR, Lepper HS, Croghan TW. Depression is a risk factor for noncompliance with medical treatment: meta-analysis of the effects of anxiety and depression on patient adherence. Archives of Internal Medicine. 2000; 160(14): 2101-7.
10. Carlson LE, Bultz BD. Benefits of psychosocial oncology care: Improved quality of life and medical cost offset. Health and Quality of Life Outcomes. 2003; 1:8.
11. Chen M-L, Chang H-K. Physical symptom profiles of depressed and nondepressed patients with cancer. Palliative Medicine. 2004; 18(8):712-8.
12. Russ TC, Stamatakis E, Hamer M, Starr JM, Kivimäki M, Batty GD. Association between psychological distress and mortality: individual participant pooled analysis of 10 prospective cohort studies. British Medical Journal. 2012; 345.
13. Howell D., Keshavarz H., Esplen M.J., Hack T., Hamel M., et al. A Pan-Canadian Practice Guideline: Screening, Assessment and Management of Psychosocial Distress, Depression and Anxiety in Adults with Cancer Version 2-2015. Toronto, Ontario: The Canadian Partnership Against Cancer and the Canadian Association of Psychosocial Oncology, July 2015.
14. Breitbart WS, Alici Y. Psycho-oncology. Harvard review of psychiatry. 2009; 17(6):361-76.