|Year : 2022 | Volume
| Issue : 2 | Page : 108-112
Holistic approach to improve quality of life in head-and-neck cancer patients using CARER model of supportive care: A prospective study
Samara Mahindra1, Paul George2, Vishal Rao3
1 CARER Personalised Cancer Care, New Delhi, Delhi, India
2 Mental Fitness Industry, Bengaluru, Karnataka, India
3 Healthcare Global Cancer Centre, Bengaluru, Karnataka, India
|Date of Submission||02-Jan-2023|
|Date of Decision||12-Jan-2023|
|Date of Acceptance||14-Jan-2023|
|Date of Web Publication||06-Feb-2023|
Ms. Samara Mahindra
Carer Personalised Cancer Care, Vijay Enclave, 33/2, 8th Main, 12th Cross Road, Malleshwaram, Bengaluru - 560 003, Karnataka
Source of Support: None, Conflict of Interest: None
Aim: To describe a model (CARER) of supportive care for head-and-neck cancer (HNC) patients and survivors.
Methods: Primary data were collected from HNC patients from November 2018 to February 2019. An intervention-based CARER protocol was prescribed to 25 HNC patients. Data on movement and meditation, emotional status, spiritual and mental well-being were assessed in patients at baseline and end line (6 weeks). CARER assessed the patients and caregiver's satisfaction through a questionnaire rating on a scale of 1 to 5 (1-worst and 5-best). Student's independent t-test was used to assess differences between various scores at different time points, and P < 0.05 was considered statistically significant.
Results: All patients received the CARER 45 program (mean age 56.0 ± 14.0 years) with 100% compliance. When compared to baseline, onco-nutrition score improved significantly at the end line (5.5 vs. 8.7, P < 0.05). Similarly, significant improvement was observed in onco-movement and meditation (5.9 vs. 6.9, P < 0.05) and onco-mental well-being scores (6.2 vs. 7.5, P < 0.05).
Conclusion: Our study supports the utilization of holistic care using CARER model for patients living with and beyond cancer. Furthermore, this study offers potential support for further research on CARER model to influence future policy and funding decisions.
Keywords: Head-and-neck cancer, holistic model, quality of life
|How to cite this article:|
Mahindra S, George P, Rao V. Holistic approach to improve quality of life in head-and-neck cancer patients using CARER model of supportive care: A prospective study. J Precis Oncol 2022;2:108-12
|How to cite this URL:|
Mahindra S, George P, Rao V. Holistic approach to improve quality of life in head-and-neck cancer patients using CARER model of supportive care: A prospective study. J Precis Oncol [serial online] 2022 [cited 2023 Mar 28];2:108-12. Available from: https://www.jprecisiononcology.com//text.asp?2022/2/2/108/369208
| Introduction|| |
Head-and-neck cancer (HNC), the 10th most common cancer across the world, is growing at an estimated 5,00,000 new cases being diagnosed annually. A wide range of tumors occurring in the oral cavity, pharynx, and larynx, which drive the basic functions of speech, swallowing, hearing, and breathing, encompasses HNC.
Apart from confronting a complex pathology of disease, HNC patients also have to deal with the serious impact of treatment on their functional and esthetic aspects. Taking quality of life (QoL) into account, HNC is no longer a matter of debate and patients along with their families need to learn to deal with the impact of both disease and treatment on their physical appearance and basic functions and also on their everyday life.
Additionally, patients of are often from the low socioeconomic status, impairing their possibility of working. Intense psychological burden along with physical disorders caused by treatment leads to poorer QoL .
With growing efforts to alleviate the burden of HNC patients, cancer care has seen a gradual shift from a disease-focused therapy to a holistic approach focusing primarily to improve psychosocial aspects, QoL, patients' rights and empowerment, and survivorship. As a result, it is critical to increase efforts to address these concerns.
A major component of holistic care, integrative care uses conventional approaches to cancer in order to stabilize emotional, spiritual, social, and lifestyle factors (diet, physical activity, sleep, relationships).
Integrated care models emphasize a patient-centered approach; wherein patients have access to high-quality care at home along with ensuring comprehensive screening for supportive care needs. Holistic care that looks past the physical needs, such as recovering from the effects of cancer treatment and addressing the risk factors associated with recurrence and incorporates the other needs of the body and spirit, is a critical unmet need. Cancer patients and survivors are often uncertain about next steps in their cancer journey and holistic care becomes an increasingly important approach. Despite the evidence to support holistic care, empirical research indicates a lack of evidence regarding posttreatment services.
Even with an estimated cancer deaths of 8, 15, 100 in India during 2016 World Health Organisation (WHO), WHO reports that India lacks an extensive integrated palliative care, with patchy activity. Lack of prioritization of palliative care at hospital level hampers adequate policy responses, resulting in restrictive regulation. Interestingly, results from a systematic review of palliative care in India also found very little evidence of appropriate models of care., Another qualitative study suggests a poor understanding among patients with fear of contagion and hopelessness in face of the diagnosis in cancer patients. Due to this lack of awareness of prognosis and diagnosis among patients and poor coverage of palliative care in India, it is essential to establish an effective and relative accessible palliative care access.
The aim of this paper is to describe a model (CARER) of supportive care for HNC patients and survivors in Bengaluru, India. This may provide insight for other care providers to consider supportive cancer care models for patients and survivors that encompass principles of holistic care. The development of such a model will enable feasible acceptable and appropriate interventions to be developed and evaluated.
| Methods|| |
Using a quality improvement approach, this paper describes how CARER protocol and holistic approach utilizes the evidence-based principles of holistic care described above to explore patients experiences and expectations of living with and beyond cancer and to identify opportunities for better practice and service provision.
Model of care
CARER personalized cancer care provides holistic care with a recognized center of excellence for integrated cancer care and supports HNC patients of all ages in Bengaluru, India, to live well with cancer. CARER is an independent organization supported by a professional team of approximately 25 staff. The team consists of oncologists, allied health practitioners, and other health-care providers to create a network of care for their patients. We operate in partnership with Aster and Manipal Group of hospitals to support quality service and do not receive any government funding.
Nutrition, exercise, yoga, meditation, and wellbeing classes are all covered by a session for 45 days (6-weeks) at Rs. 25,000. Another CARER integrative monthly subscription program for 30 days costing Rs. 25,000/- offers nutrition, movement and meditation, and mental well-being sessions to required group of patients.
Description of model
CARER is the first and only company in India to provide holistic and complementary therapies to cancer patients. CARER has established the concept of Integrative Oncology by using nonclinical therapies which are scientifically proven to improve patient outcome and QoL. CARER has devised a protocol based on the advice of oncologists and cancer therapists that is enabled by technology and provided at home. Specialized in Onco care, CARER's protocols are focused toward cancer patients' on-treatment, posttreatment, rehabilitation, and palliative/end-of-life care. The therapies work alongside medical treatment which include: Onco-Nutrition Therapy, Onco-Movement and Meditation Therapy, and Onco-Mental Wellbeing Therapy. The CARER protocol has been developed by cancer care specialists and clinicians to follow a systematic approach which has proven to be the most effective and beneficial for patients and survivors during and posttreatment. This systematically and methodically targets mental, emotional, physical rehabilitation and recovery, and QoL.
The therapies work alongside medical treatment which include: Onco-Nutrition Therapy, Onco-Movement and Meditation Therapy, and Onco-Mental Wellbeing Therapy. CARER Protocol – CARER 45 – is recommended to patients on treatment and those just off treatment. CARER 45 is a 45-day (6-week) program focusing on the patient's condition to ensure decrease in side effects, to increase efficacy of treatment and increasing immunity. It is a completely personalized and adaptable protocol as per patient's diagnoses, prognosis, background, and lifestyle. It enables substantial healing and recovery while initiating permanent lifestyle changes. If on treatment, CARER 45 helps in managing the symptoms and dealing with the disease, food, body, and mind. If off treatment, CARER 45 then focuses on complete recovery and rehabilitation by re-building the immune system, strengthening the body and mind, and helping the patient adapt to a new normal. The protocol will create awareness in maintaining a healthy lifestyle and decrease the chances of relapse, by engaging in therapies, all in the comfort of their home.
A total of 25 HNC patients, on-treatment or posttreatment, were enrolled into the CARER 45 Protocol, which offers combined specialized yoga + functional mobility, mental well-being therapy (Coaching), and clinical nutrition to complement mainstream therapy. The program was offered through a network of trained therapists, at patient homes. Feedback was sought from patients and therapists at every initiation and conclusion of the program, in order to gauge improvement in patient condition, and also to further crystalize the assessments to be included.
Tools – CARER data and assessments
CARER administered assessments using CARER Internal Assessments – CARER's Onco- therapy analysis (qualitative data). This included collection and counseling of patients for nutrition, movement and meditation, emotional/mental evaluation, spiritual evaluation, mental well-being, and a postevaluation. All the assessments were shared with patients, caregivers, and clinicians on a weekly basis.
CARER assessed the patients and caregiver's satisfaction through a questionnaire rating on a scale of 1 to 5 (1 being the worst and 5 being the best). We were open to patient's and caregiver suggestions and feedback in order to improvise our services to serve the patient and his/her family better.
CARER methodology for head-and-neck cancer
The CARER methodology was customized to adapt to HNC pilot group. Below is a summary on how CARER adapted the protocol to pilot patients:
The diets were customized to follow with the diet provided at the hospital, with guidance from the clinical nutritionist in the patient's home. The diet plans were dependent on the patient's level of tolerance, and in some cases, due to medical complications. When compared to other cancers, HNC patients are at risk for cancer cachexia or impaired nutritional status causing involuntary weight loss and require nutritional assistance to increase weight and increase nutritional intake through the different types of feeds. The focus was on building the nutritional status by managing the side effects and also improving the immunity of the patients. Parameters such as level of weakness, appetite, nausea, constipation, fatigue, and acidity were assessed.
Onco-movement and meditation
The Movement and Meditation therapy incorporated a combination of therapeutic yoga techniques, physiotherapy, and functional movement to provide physical rehabilitation for a patient. The session protocol was differentiated by the type of patient, requirements of the patients, and the needs of the patient, and was personalized to focus on combinations of the same. Ability to do strenuous activity, ability to take long walks/short walks outside the house, shortness of breath, physical pain, and quality of sleep were assessed.
The Mental Wellbeing program for HNC focused on coaching techniques instead of psycho- oncology, providing a support system to the patients and their family members. The focal point was acceptance and motivation and the coaches were restricted from using any counseling techniques with the patient and caregiver. Coaches were primarily present to make sure that the patient was on the right track with the protocols and in the right state of mind to move ahead. Concentration levels, stress levels, irritability, depression, motivation, and so on were assessed.
All categorical data were presented as mean ± standard deviation at various follow-up period (baseline, mid- and end line). Student's independent t-test was used to assess the difference between various scores at different time point, and P < 0.05 was considered statistically significant.
| Results|| |
A total of 25 HNC patients were enrolled from Manipal hospital and the CARER 45 program was explained to patients in their local language. The mean age of the study patients was 56.0 ± 14.0 years, and all received the CARER 45 (6-week) program which encompassed diet, yoga, and mental well-being components. Majority of the patients were men (N = 19) and 100% compliance was observed.
When compared to baseline, onco-nutrition score improved significantly at end line (5.5 vs. 8.7, P < 0.05). Similar significant improvement was observed in onco-movement and meditation (5.9 vs. 6.9, P < 0.05) and onco-mental well-being scores (6.2 vs. 7.5, P < 0.05). A systemic improvement in scores was observed in all domains from baseline, midline, and end line follow-up period [Figure 1].
| Discussion|| |
Results of this pilot study describe the efficacy of holistic care in patients living with and beyond HNC cancer. Although the current data provide formative data to CARER for further planning and improvisation, it also provides promising evidence in support of models that provide holistic care for cancer.,
With this pilot study, we observed that HNC is more prevalent in men than in women. In agreement with established risk factors, smoking and alcohol consumption were major cause for HNC.
Psychologically, HNC patients can recover faster when they are willing to explore their own limiting beliefs as well as sharing their feelings. This remains a constant factor for patients across different economic strata as well as age groups. Another point of concern is the fear and insecurities brewed by the patients' family which adds to the existing stress, hindering patient recovery. Therefore, preventing and detecting cancer through lifestyle management techniques and the education of the public is a foremost entity. For those patients with cancer, it is very important to incorporate the use of scientifically proven treatment with social and symptoms management.,,,,,,,, Onco-nutrition provides nutritional support and increases caloric intake through liquids and semi-solid foods; onco-movement and meditation exercises increase saliva secretion, allow efficient chewing of food as well as improve speech recovery, supports in creating mobility of the patients' neck and shoulders, provides exercises to increase energy, undisturbed sleep, chanting, and meditation to manage the flow of breath, and provides complementary therapies to heal the mind, soul, and body and accepting a positive state of mind. On the other hand, onco-mental well-being therapy helps to address the emotional changes, accepting love from family, and moving forward. Therapists learn to be in a higher energy level, so when the patient and therapist are together in session, they are able to share the vibration. CARER teaches patients and their families care in the home, regardless of its outcome.
The primary challenge of our organization is to meet the needs of growing incidence of cancer survivors within rural and regional areas. This is further worsened, as many survivors and their families do not seek available and needed services. Patients and family members do not take advantages of available services to assist them during and after treatment. As a result, CARER plans to expand services furthermore to increase the likelihood of access.
There are several limitations in this study that should be noted. First, a small sample size limits the extrapolation and interpretation of the results. Furthermore, because the patients chose to participate self-selected, it could have induced an element of bias. Finally, lack of comparison group restricts determining the differences between those who responded and those who did not.
Despite these limitations, this study provides significant insight and contribution to the emerging literature that discusses the utilization of holistic care for patients living with and beyond cancer. Furthermore, this study offers potential support for further research to influence future policy and funding decisions.
CARER has a continuous quality improvement strategy with continuous research and evaluations of the program. Future research will examine specific measures of QoL to understand improvement in the patients' lives, gaining perspectives of the team working with patients, with the goal of demonstrating effectiveness and possible replication of the program to other regional areas of Bengaluru and beyond.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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