Testing the accuracy, usefulness and possibility of a screening tool to identify Serious Health-related Suffering across few tertiary health care institutions across India
- Conditions
- Neoplasms,
- Registration Number
- CTRI/2021/09/036681
- Lead Sponsor
- NATIONAL CANCER GRID INDIA
- Brief Summary
The primary goal of palliative care is alleviation of suffering; physical, psycho-social and spiritual. Serious health-related suffering (SHS) as defined by the *Lancet* Commission on Palliative Care and Pain Relief (2018) indicates suffering associated with a need for palliative care, and estimated the global burden using mortality data for 20 conditions, adjusted for the prevalence of both physical and psychosocial symptoms. The Global Atlas of Palliative Care 2nd Edition, 2020 maps and reports a very high burden of suffering in the LMICs (993 per 100,000) (World health organization- WHPCA). However, little has been done in assessment of suffering and capturing this in a holistic way. Cancer is one of the major contributors of Serious Health-related Suffering (SHR). The first active step to alleviate SHS is to screen cancer patients for this. NCG SHS Tool is envisaged as a screening tool to identify the major distresses in cancer patients who reach healthcare settings and help trigger appropriate care-responses to address them. The field test aims to pilot the NCG SHS Tool (annexure 1) to check the feasibility and validity. The NCG SHS screening tool will be administered to English speaking patients from the Medical Oncology Department (OP and IP settings). They will also be interviewed by a trained psychologist as a comparable standard. This will be done on a minimum of 256 participants across ten cancer-care centers in India. The feasibility, validity and usefulness of this NCG SHS tool will be studied. The assessor and respondent burden, right personnel and setting for administration of the tool and the training material and delivery to administer this tool will also be evaluated.
**Annexure 1: NCG-SHS Tool for Field Testing -** [**https://efficiency365.com/shs/**](https://efficiency365.com/shs/)
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|**NCG - SHS Tool for Field Testing**
|**Domains of Health-related Suffering**
**Not at all**
**Score 0**
**A little**
**Score 1**
**A lot**
**Score 2**
**Domain Score**
|**Associated with your health, do you suffer physically?** With pain/ breathing difficulty/ vomiting/ constipation/ weakness / feeding/loose motion/ bleeding/ itching/ wounds /difficulty with senses (see, hear, smell, touch, taste) / difficulty moving/ other issues
P =
|**Associated with your health, do you suffer emotionally?** Feeling sad/ unloved / worried/ angry/ lonely/ difficulty sleeping/ confused/ poor memory / other issues
E =
|**Associated with your health, do you suffer due to** issues with family/ relationships/ friends/ community/ feeling isolated/ difficulty at work/ difficulty with hospital visits/ difficulty communicating/ other issues
S =
|**ÂAssociated with your health, do you suffer due to** feeling punished/ fearful/ shame / guilty / angry with God / no meaning in life/ disconnected / other issues
Sp =
|**Associated with your health, do you suffer due to** lost job/ stopped studies/ stopped working/ loan/ debt / sold property/sold assets/migrated out / other issues
F =
|Is there Presence of **Health-related Suffering?**
**P + E + S + Sp + F**
**Total Score**
**> 2**
**Total Score**
**< 2**
|**Domains: P- Physical; E – Emotional; S – Relations/Social; Sp – Spiritual; F- Financial**
|Checkbox Crossed**Total Score < 2** **Ã** **SHS**
The screening for SHS is continued at pre-decided intervals, as per the Institutional policy
|**Total Score > 2**
**Check for** **Seriousness** of the health-related suffering by asking the 2nd level questions
|**A)** **Has this suffering limited you from doing what you need to do, for > 14 days over the last 30 days?** e.g. self-care (feed, bathe, dress, walk, toilet); care for others; communicate; learn /think/perform duties; sleep / rest? **Yes / No**
**B)** **Ask the patient –** Do you seek additional help for your concerns?
**Yes / No**
|**Responses to the 2nd level questions**
**Screening Outcome to be recorded on the Case Sheet**
|**1.** **o****YES to both A and B**
Notify the treating team and activate further evaluation and care-pathways as decided by the department/institution
Checkbox Checked**SHS**
Checkbox Checked**Patient Seeks Help**
|**2.** **o****NO to A and YES to B**
Notify the treating team, so they may evaluate further and activate care-pathways as decided by the administration.
Checkbox Checked**SHS**
Checkbox Checked**Patient Seeks Help**
|**3.** **o****YES to A and NO to B**
Educate patient/family about availability of support and encourage to seek support when they need; empower with information.
Checkbox Checked**SHS**
Checkbox Crossed**Patient Seeks Help**
|**4.** **o****NO to both A and B**
The screening for SHS is continued at pre-decided intervals, as per the Institutional policy.
Checkbox Crossed**SHS**
Checkbox Crossed**Patient Seeks Help**
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- Detailed Description
Not available
Recruitment & Eligibility
- Status
- Not Yet Recruiting
- Sex
- All
- Target Recruitment
- 256
•Adult patients (>18 years of age) with cancer •Able to comprehend English language •Able to use, understand and fill out the tool (android application/ paper form).
Not willing to participate.
Study & Design
- Study Type
- Observational
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method •Feasibility of the use of NCG SHS Screening tool among English speaking cancer patients single, at baseline •Validity of the NCG SHS Screening tool to identify Serious Health-related Suffering among cancer patients single, at baseline
- Secondary Outcome Measures
Name Time Method The challenges perceived by the patient and the assessor in the use of the NCG SHS tool. The adequacy of training material and training offered in the use of the NCG SHS tool.
Trial Locations
- Locations (9)
St.Johns Medical College Hospital
🇮🇳Bangalore, KARNATAKA, India
Amrita Institute of Medical Sciences
🇮🇳Kozhikode, KERALA, India
Christian Medical College
🇮🇳Vellore, TAMIL NADU, India
Homi Bhabha Cancer Hospital and Research Centre
🇮🇳Visakhapatnam, ANDHRA PRADESH, India
Kasturba Medical College
🇮🇳Udupi, KARNATAKA, India
MNJ Institute of Oncology & Regional Cancer Centre
🇮🇳Hyderabad, TELANGANA, India
Regional cancer centre, Cancer Institute (WIA) Adyar
🇮🇳Chennai, TAMIL NADU, India
Tata Medical Center
🇮🇳Kolkata, WEST BENGAL, India
Tata Memorial Hospital
🇮🇳Mumbai, MAHARASHTRA, India
St.Johns Medical College Hospital🇮🇳Bangalore, KARNATAKA, IndiaDr Medha Sugara Associate Professor of Surgical OncologyPrincipal investigator080-22065907medha.sugara@gmail.com