Neuropalliative Care Needs Checklist for Motor Neuron Disease and Parkinson’s Disease: A Biopsychosocial Approach

INTRODUCTION

Neurodegenerative disorders constitute a collection of progressive and irreversible conditions of the nervous system that eventually lead to dysfunction and death. As this group of diseases has a debilitating course and is fatal, the management needs to include a palliative care approach.^[1] Palliative care is a comprehensive approach offered to individuals grappling with illnesses that impose limitations on life, along with their families.^[2] Providing care for individuals afflicted by neurological disorders is intricate and demanding for patients, their caregivers, and the healthcare professionals engaged in their treatment.^[3] Since the care demands are multifaceted and complex, it is crucial that patients with life-limiting conditions have access to specialised services. The European Academy of Neurology and the European Association for Palliative Care stressed that, depending on the underlying illness, neuropalliative care must be implemented in the early stages of disease progression.^[4] The need for neuropalliative care has been well recognised in motor neuron disease (MND) and Parkinson’s disease (PD).^[5-9]

In cases of progressive neurological conditions, access to specialised palliative care services is often limited.^[10] The importance of adopting a biopsychosocial approach in neuropalliative care in routine practice has been discussed in previous studies.^[2,11] The existing literature also indicates that there is limited understanding of the palliative care requirements for individuals with neurodegenerative conditions.^[12] The specific tools for MND or PD do not evaluate the palliative care needs; hence, for assessing the palliative care aspects in these conditions, other general tools are used. One challenge that exists in instituting optimum neuropalliative care is the limited understanding of when the transition to palliative care should take place in neurodegenerative disorders. There is a need for a targeted, easy-to-administer tool to identify specific areas that require immediate palliative care support.

The available tools used to assess the palliative care aspects of people with neurodegenerative disorders include the Cambridge Palliative Audit Schedule (CAMPAS-R),^[13] Edmonton Symptom Assessment System (ESAS),^[14] Family Appraisal of Caregiving Questionnaire for Palliative Care (FACQ-PC),^[15] Functional Assessment of Chronic Illness Therapy-Palliative subscale (FACIT-Pal),^[16] Palliative Care Outcome Scale (POS),^[17] Palliative Performance Scale (PPS).^[18]

The illness-specific tools to assess Motor Neuron Disease (MND) include the Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS),^[19] Amyotrophic Lateral Sclerosis Severity Scale (ALS-SS),^[20] ALS Specific Quality of Life-Revised (ALSSQOL-R),^[21] Edinburgh Cognitive and Behavioural ALS Screen (ECAS),^[22] Emotional Lability Questionnaire,^[23] Motor Neuron Disease Dyspnea Rating Scale,^[24] MND-specific Quality of Life instrument (ALSAQ-40).^[25]

For Parkinson’s Disease (PD), the specific assessment tools are Hoehn and Yahr Scale (HY),^[26] MDS-Unified Parkinson’s Disease Rating Scale (MDS-UPDRS),^[27] Non-Motor Symptoms Questionnaire (NMSQ),^[28] Parkinson’s Disease Questionnaire (PDQ-39),^[29] Parkinson’s Fatigue Scale (PFS-16),^[30] Parkinson’s Disease Sleep Scale (PDSS).^[31]

Given the multidimensional nature of neurodegenerative disorders and the need for holistic care, a blend of disease-specific as well as generic scales is at present being used to understand the varied needs. The current paper describes the development of a checklist to recognise the palliative care needs of people with neurodegenerative disease, with special reference to MND and PD within a biopsychosocial framework.^[11]

MATERIALS AND METHODS

RESULTS

Step 5: Item weighting

Cronbach’s alpha was utilised to evaluate the internal consistency of the items on the checklist, yielding a value of 0.80. This value suggests a good level of internal consistency for the checklist. Figure 1 explains the five steps^[33] used to develop the checklist.

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Figure 1:

The five steps^[33] used to develop neuropalliative care needs checklist NPCNC.

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DISCUSSION

The dearth of tools to categorise the palliative care needs among neurodegenerative diseases resulted in the development of neuropalliative care checklist for neurodegenerative disorders with a special focus on the physical and psychological illness-specific needs identification. Collaborating with individuals, families, and communities is crucial for delivering holistic palliative care services that enhance the quality of life. To provide any services, it is important to assess their needs, and for that, one needs a scientific instrument. The existing scale on palliative care evaluates the gradual deterioration in mobility, activity engagement, self-care capabilities, oral intake, and levels of consciousness, as well as the presence of depressive symptoms and the burden on caregivers. These instruments are employed for particular target populations within specific contexts. Therefore, there was a recognised need to create a checklist tailored to discern the palliative care requirements of individuals, with a distinct emphasis on two neurodegenerative conditions, namely, MND and PD, within the framework of Indian culture.

Research has demonstrated that neurological disorders are predominantly incurable, characterised by a restricted life expectancy^[37], and linked with pain, depression, and other symptomatic manifestations.^[38] The symptoms that require relief as a person nears the end of life in these disorders need to be evaluated from a biopsychosocial framework with equal emphasis given to physical as well as psychosocial and other domains such as spiritual and cultural. Essentially, this care has to be multidisciplinary and involves different disciplines that contribute to the well-being of the affected individual and their families.

From the diagnosis of neurodegenerative conditions, patients and families are informed about the incurable nature and possible progressive deterioration. Existing literature underscores the recommendation for early referral to palliative care services, even from the point of diagnosis.^[39] Nevertheless, considering the constrained availability of palliative care services in resource-limited low- and middle-income nations, it becomes imperative to establish certain explicit indicators that can facilitate the referral process for these essential services.^[40] This necessitates the development of instruments that give clear indications about transition points to palliative care.

Unlike other medical conditions that may require palliative care interventions, except for MND, most neurodegenerative conditions have a prolonged course. Cognitive impairment, behavioural issues, and communication difficulties are commonly observed in progressive neurodegenerative conditions.^[39] This highlights the need for palliative care assessment tools specifically designed for these neurological conditions. Since neurodegenerative conditions encompass a wide range of symptoms and illness courses, a generic indicator for palliative care services may not be applicable. Disease-specific rating scales and palliative outcome scales, supplemented by the checklist, are necessary to identify the specific areas that require support.

These implications highlight the significance of individualised and extensive palliative treatment for people with neurodegenerative illnesses. Developing and implementing appropriate assessment tools, such as the neuropalliative care checklist, can significantly elevate the quality of care provided to patients and their families grappling with these complex illnesses.

CONCLUSION

The development of the neuropalliative care checklist for neurodegenerative conditions is a valuable contribution to the field of neuropalliative care. Existing assessment tools for palliative care in neurodegenerative disorders have limitations, and the NPCNC addresses the need for a comprehensive checklist that captures the multidimensional nature of these conditions. By focusing on both disease-specific and generic needs, the NPCNC provides a more holistic assessment of palliative care needs in MND and PD. With further testing and refinement, the NPCNC has the potential to enhance the provision of holistic and patient-centered care for individuals with these neurodegenerative disorders.