Enhancing Pain Assessment in Children with Neurodegenerative Disorders

Introduction: Pain in children with neurodegenerative disorder are regarded to highly affect their quality of life and thus, its delayed assessment would lead to unfavourable events. The observation and description of pain from the carers for the children with neurodegenerative disorder are often found to be subjected to bias. This creates challenges in determining the exact level of pain for the children with neurodegenerative disorder. Thus, identification of a systematic pain assessment tool is to be executed so that it enhanced use can be promoted to effectively assess the pain of the children with neurodegenerative disorder without confusion.

Aim: The aim of the quality improvement is to introduce best pain assessment tool for measuring pain in children with neurodegenerative disorder of 8-16 years of age living in the community as well as the reporting of pain by the children.

Stakeholders: The key stakeholders to be benefited from the quality improvement or change are the children with neurodegenerative disorder of 8-16 years in the community as well as the community nurses and health professionals.

Strategies for Quality Improvement: The strategies to be implemented in making the success of the change include delivery of training session regarding use of Paediatric Pain Profile (PPP) tool for pain assessment in children with neurodegenerative disorder, educational session for pain identification and expression in children with neurodegenerative disorder and distributing leaflets regarding challenges faced in pain expression by children with neurodegenerative disorder in care.

Measures to be taken for evaluation of the project: The measurement of the success of change in making an improvement will be executed for the current project by collecting qualitative as well as qualitative data.

Governance and Ethics: In the quality improvement project, no ethical and governance issues are faced.

Conclusion: The project concludes that pain assessment in children with neurodegenerative disorder is a challenging task and the actions determined to be taken will be used in managing the issue for quality improvement in care.

Pain is referred to the common symptoms perceived by patients of different ages in the healthcare setting due to their different range of health complications. The pain assessment is easier in adults and normal children due to their cognitive efficiency in explaining their pain and wide availability of evidence-based pain assessment tool to measure pain. However, in children who have neurodegenerative disorder like Down syndrome, the pain assessment is difficult to be performed due to their lower cognitive ability to inform the level of pain. There are existing pain assessment tool present in the community for measuring pain of the neurodegenerative disorder children but their use in the community is seen to be performed in less frequent manner. Thus, the current quality improvement is focussed on explaining the way specific pain assessment tool for pain assessment of neurodegenerative condition children are to be used widely. In this purpose, a brief background and literature review of the topic is to be presented to determine the existing information. Thereafter, a quality improvement plans containing aim, methods, key stakeholders, measurement approach and others are to be explained.

The International Association for the Study of Pain mentions that Pain is an unpleasant sensory as well as emotional experience which is related to potential or actual damage of the tissue (Treede, 2018). The elements regarding potential or actual tissue damage in children are varied which leads to varied amount of pain in them. However, assessment and treatment of pain in children with neurodegenerative disorder is regarded as a challenging activity for the nurses and health professionals to be effectively detected to resolve it (Cascella et al., 2019). The study by Perides et al., (2020) mentions that pain in children with neurological disorder are often causes of their hospital admission and attribution to wrong beliefs that they are faking pain, would not remember it and expressing pain for accessing attention makes the feeling worse for them. The challenges of pain measurement in children with neurodegenerative disorder leads to the inaccurate assumption of pain in them which makes them vulnerable in receiving repeated and prolonged pain including procedural pain. It would subsequently lead the children to experience traumatic stress, interference of their response to medical support, performing academic actions and others (Andersen et al., 2017).

Pain in children with neurodegenerative disorder are regarded to highly affect their quality of life and thus, its delayed assessment would lead to unfavourable events regarding intellectual and social performance which makes them vulnerable to face increased hospital admission (Beltramini et al., 2017). In children with neurodegenerative disorder, the pain is assessed usually through emotional, behavioural and cognitive pictures but the pictures are found not to provide adequate data regarding the level of pain suffered by the children (Albayrak et al., 2019). The studies by Eccleston et al. (2020) and Rabbitts et al. (2017) has explained leaving pain untreated in children for long time leads to negatively affecting their neuro-sensitivity, immune system, neurophysiology and everyday actions apart from their health and career. These effects are serious consequences for children and therefore effective early interventions for pain assessment are taken in such condition.

In regard to pain assessment in children with neurodegenerative disorder, in contemporary condition, many primary healthcare facilities are found to be specifying special section dedicated to pain assessment and management. However, irrespective of the available feasibilities the children might not be able to recognise and identify pain. In addition, the presence of cultural and religious myths is also seen to contribute as barrier towards detection of pain in children with neurodegenerative disorder as immediate referral of the child to proper care is not achieved. Thus, in this study, the detailed challenges faced in pain assessment of the children with neurodegenerative disorder is to be determined to develop idea regarding the actions that are leading to the worsening of the pain assessment for them. In addition, the facts would indicate the nature of pain assessment tools to be regarded as best for introduction to encourage their use on the community with efficiency as quality improvement regarding pain assessment in children.

Literature Review

The sensation of pain occurs due to several interactions of neural system in the body that transmit signal modulated by various descending pathways which constitute the analgesia system (Warlow and Hain, 2018). There are mainly four types of pain perceived by the children which are nociceptive pain, inflammatory pain, neurotic pain and functional pain (Olson, 2021). The nociceptive pain is the pain caused due to damage to the tissues of the body leading to perception of aching, sharp tinging and throbbing. It is often caused due to external injury in children such as scraping the knee during playing, scraping of gums during dental procedure and others (Olson, 2021). The inflammatory pain is referred to the spontaneous feeling of hypersensitivity to pain which occurs due to internal damage of the tissue leading to inflammation. Its symptoms include swelling, redness, feeling of heat in the injured area and others (Eccleston et al., 2017). In contrast, neurotic pain is referred to pain caused due to damage of the nervous system or hindered working of the neuronal signalling. The spinal cord, brain and peripheral nerves are the key areas of nervous system from which the neurotic pain develops in individuals (Bowlby, 2019). The functional pain is referred to pain that could not be traced to any origin and often organ system involved in displaying the pain in individuals (McClellan and Ahlawat, 2021).

In order to understand the way and best tool to assess a child’s pain, it is necessary to understand the psychological, biological and sociocultural factors that are influencing the expression and experience of pain in children as presented in Engel’s biopsychological model. This is because viewing of the factors influencing children’s pain in the process leads the nurses to specially tailor pain assessment for each child (Kirmayer and Gómez-Carrillo, 2019). According to biopsychosocial model, apart from physical health, the age of the child, level of cognitive competence, temperament, fear and experience with previous pain influence their pain perception and expression (Frazier, 2020). As mentioned by Beltramini et al. (2017), level of cognitive development in children influences the way they perceive and experience pain. This is because children who do not understand pain but experiences it are seen to respond in anxious way while failing to mention the reason for their behaviour leading to misconception that they are facing emotional turmoil due to which they are behaving inappropriately. As argued by Bozkurt and Şahin (2017), many children as patients are found to show developmental disability such as Autism, Asperger’s syndrome, Down syndrome and others which makes them more prone to trauma and pain which they are unable to express. This is because of their hindered cognitive efficiency created out of disorder which makes them incapable to explain pain and makes it challenging to be detected for control by the nurses and health professionals.

The fear and previous painful experiences in children highly influence their perception of painful events and expression of pain to be assessed by the nurses. This is because the children who expressed fear regarding pain and has been negatively managed for the pain expressed previously by the carer would avoid informing regarding the pain. It is evident as such children avoid to face the similar trauma and disbelief regarding their pain perception by the carers, in turn, creating barriers to know regarding the suffering of the child (Fisher et al., 2018). Thus, the higher level of fear and negative experience of pain assessment as well as management leads the children avoid express their pain to nurses creating barrier towards its effective diagnosis to be offered support for their well-being. The study by Alotaibi et al. (2019) mentions that lack of cooperativeness from children and their hindered ability to describe pain in a medical way act as challenge towards pain assessment for them. This is because it creates obstacles for the health professional and nurses to identify the child in pain and determine their nature of pain to diagnose its occurrence to resolve it through effective treatment.

In the study by Andersen et al. (2019), it is mentioned in case of urgent live-saving situation, the worry regarding pain control in patients may they be children or adults is not necessary. This is because the vitality of saving the life of the person and identifying its related resources is essential in the condition. However, the ignoring of responding to such pain makes the children feel lack of effective care and they avoid expressing the pain. This is because they fear to disappoint the carer, in turn, creating barriers towards effective pain assessment (Manocha and Taneja, 2016). It is argued by Andersen et al. (2019), pain assessment is children is difficult as carers and health professional considers they would express pain by showing some visible signs like crying, sweating, muscle tension, tachycardia and others. The absence of the typical symptoms of pain makes the carer ignore the context of the health and fail in executing timely pain assessment for the children.

The study by Lazaridou et al. (2018) mentions that children learn about the way to experience, cope and report pain through observation of the responses of the parents and caregivers and those responses are influenced by stereotypes and societal expectations. It is evident in the way that sex-role socialisation happens in the family and boys often seen to receive parental cues to supress pain as well as its expression as it indicates them to be weak. Thus, such learning leads the children report less expression or cues of pain creating barrier towards its assessment by carers as they are unable to reveal from the children that they are in pain. As argued by Alotaibi et al. (2018), carers and health professionals focus on identifying and assessing pain perception in children through psychological and behavioural signs that are misleading at times. This is because children experiencing pain from significant health condition like cancer, surgery, trauma and others may withdraw from society and quiet leading them to be considered in peace by the health professionals. The incorrect assumption leads to avoid pain assessment in children which adds to their suffering and ignored feeling by the carers and professionals (Harrison et al., 2019).

The children with neurodegenerative disorder who are experiencing pain may be seen to playing effectively and performing everyday activities without any issue to distract their attention from the pain. This coping mechanism of them leads the nurses and health professionals to develop wrong perception regarding their behaviour and fail in identifying pain for its effective assessment (Monitto et al., 2017). In view of the difficulty in pain assessment of children, few steps are taken such as using self-reporting measurement of pain by the children as they inform the pain perception based on the subjective experience of pain and is convenient to be used (Tutelman et al., 2018). However, the use of the measure in reporting and assessing pain is limited by the communication skills of the patients who are children with neurodegenerative disorder. It is evident as children due to lower cognitive development may self-report pain perception in a different way from which it is difficulty to accurately assess the level of pain they are facing by the health professionals (Birnie et al., 2019). The other pain assessment method implemented for children is using charts and colour pictures as reference to report their pain to be assessed by the health professionals and nurses, However, the limitation with the method is that the intellectual ability of the children in this method is required to be high which may not be present in children with neurodegenerative disorder leading to hindered examination of pain (Freund and Bolick, 2019).

The study by Nunna et al. (2019) informs that acute pain in children with neurodegenerative disorder is seen to overlap the chronic pain perceived by them leading to show their effective pain expression for assessment. Thus, in such pain assessment the children are required to have a strong personal profile which may not be present in all to mention the diagnosis of both pains effectively by the carers. As argued by Amponsah et al. (2020), observation and description of pain from the carers for the children with neurodegenerative disorder are often found to be subjected to bias. This creates challenges in determining the exact level of pain for the children. Thus, most of the existing studies are focussed on mentioning pain assessment to be a challenging task for health professionals and carers. The pain assessment tool like self-reporting measures and visual indications are mentioned to be used but they are creating limitation towards effective assessment. Thus, identification of a systematic pain assessment tool is to be executed so that it can be used to effectively assess the pain of the children with neurodegenerative disorder without confusion. It is necessary as the current challenges in pain assessment are leading to the hindered health condition and well-being management of the children with neurodegenerative disorder.

Proposal for improvement

Aim

The aim of the quality improvement is to encourage improved use of best pain assessment tool for measuring pain in children with neurodegenerative disorder of 8-16 years of age living in the community as well as the reporting of pain by the children.

The accomplishment directed through the aim is inclusion of best pain assessment tool which is Paediatric Pain Profile (PPP) tool in community settings to be used in measuring pain level and examining their location, region, severity and timing in children with neurodegenerative disorder of 8-16 years of age. This is because the existing measures such as self-reporting of pain and use of pictorial support in assessing pain are seen to have failed in determining the exact pain level in children with neurodegenerative disorder. It is evident as the tools are unidimensional and depend on increased presence of intellectual and cognitive ability of the children to examine pain through them which is not present in children with neurodegenerative disorder to effectively report pain (Fernandes et al., 2014). However, the Paediatric Pain Profile (PPP) tool is a multi-dimensional tool for assessing pain which is designed to determine pain in children with neurodegenerative disorder of 8-17 years of age (ppprofile, 2021). Thus, the encouragement of improved use of the tool is important in determining the pain by assessing its based in its different parameters.

The specific goals for improvement are follows:

To introduce the Paediatric Pain Profile (PPP) tool for pain assessment in children in the community

To train nurses, health professional and others for effective pain recognition and assessment in children with neurodegenerative disorder in the community

To make carers, nurses and health professionals consider pain experience in children with neurodegenerative disorder to be vital part of health examination

Key Stakeholders

The key stakeholders to be benefited from the quality improvement or change are the children with neurodegenerative disorder of 8-16 years in the community as well as the community nurses and health professionals. This is because effective presence of pain assessment tool along with its training to encourage its use would help the nurses and health professionals in the community aware of the way they can make effective pain assessment of children with neurodegenerative disorder (Brand and Al-Rais, 2019). It is argued by Ivanova (2019), enhanced pain assessment would enhance healthcare worker’s ability to show concern and better outcomes for the children with neurodegenerative disorder. This is because effective pain assessment would make the health professionals and care in the community deliver holistic care to the children without neglecting identification of pain in them (Dana and Tefera, 2021). The children with neurodegenerative disorder are to be benefited as they no longer require to fear and become confused regarding the way to mention they are in pain to the health professionals to examine them in measuring the pain. It would also reduce their suffering and better health outcome due to delivery of treatment with detection and assessment of pain (Whitley et al., 2020). The key stakeholders to participate in making the change are the carers, nurses and health professionals in the community and primary care settings. This is because they are key clinicians and service providers who are responsible in assessing pain of children with neurodegenerative disorder who are patients.

Method

The changes determined to be introduced in making quality improvement is introducing efficient use of Paediatric Pain Profile (PPP) in each pain assessment of all children with neurodegenerative disorder. The other change to be introduced in relation to it is the nurses and health professionals are to be shown the positive intention that pain is vital health condition for all children as patients and they are to execute pain assessment for them irrespective of any observational pain symptoms or behaviour. They are to show compassion and empathy towards the children with neurodegenerative disorder as patients to make them feel safe to reveal their pain instead of hiding them so that it can be assessed. For generating the explained improvement, the Kotter’s Change Management model is to be followed. This is because it provides systematic instruction regarding the way any mentioned change is to be accomplished for enhanced quality improvement in the long term (Tyler, 2019). However, Lewin’s model will not be used because it does not allow opportunity in creating continuous change is lack effective explanation of detailed steps to be followed in making a long-term change (Saad et al., 2021).

The initial step is creating sense of urgency for making the change which is important for influencing the stakeholders to make the change approve of the action and show effective involvement (Harrison et al., 2021). In creating sense of urgency, usually potential threats created by the existing way of working are highlighted. However, in making the current change, the sense of urgency will be built among the stakeholders making the change by leading them hear honest dialogues from the existing and previous children with neurodegenerative disorder as patient. the dialogues will be regarding the way their behaviour and action has limited their pain expression and increased their suffering. Moreover, the action to be performed is making the nurses, carers and health professionals in the community aware that pain assessment through visual observation of the pain symptom behaviours of the children with neurodegenerative disorder and use of self-reporting pain questionnaire are to be avoided and instead a structured tool is to be used for sharing of evidence-based information.

The Kotter’s model mentions to implement a change, effective coalition is to be formed where the leaders are identified and the stakeholders who are to act as followers are collaboratively involved in showing commitment to create the change as a team (Bird, 2021). In this respect, the action to be performed differently for making the change will be creating a team of followers involving the healthcare workers and nurses along with health professionals with a leader as the health manager. The manager will be responsible for directing the team in making the change rather than acting alone to make the improvement. This is because collaborative working help in creating a powerful exchange of potential ideas regarding the best strategies to be followed in successful attainment of the change (Hales et al., 2020). The Kotter’s model mentions the next step is developing a vision and strategies to be followed in making any quality improvement or change (Kumar et al., 2018). In this respect, the action to be performed differently to generate improvement is the development of vision of change. The vision for quality improvement is generation of effective pain assessment of children in the community by use of Adolescent Paediatric Pain Tool (APPT) and overcoming challenges of pain identification by healthcare staff.

The strategies to be implemented in making the success of the change include delivery of training session regarding use of Paediatric Pain Profile (PPP) tool for pain assessment in children with neurodegenerative disorder, educational session for pain identification and expression in children with neurodegenerative disorder and distributing leaflets regarding challenges faced in pain expression by children with neurodegenerative disorder in care. The training session to be performed is going to inform the people involved in making the change way to use the body outline diagram in making children with neurodegenerative disorder mention in which part of the body they are facing the pain. Moreover, in the training, use of word graphic pain scale is to be informed to help them understand the way they are to determine intensity of the pain. Thereafter, the list of pain descriptors is to be suggested by the stakeholders involved in the change to be kept and way simplified words could be used in making the list so that children can easily mention them through understanding to inform the quality of pain.

In addition, the staffs are to be educated about the way children with neurodegenerative disorder as a patient who has previous negative experience of informing pain to the carers are to be influenced to report and approve assessment of pain through the use of the scale. They are to be educated regarding the way children with cognitive and intellectual difficulty are to be approached in making them inform pain for its effective assessment by the staff. The informative leaflets are to be circulated among the stakeholders involved in the change to understand the do’s and don’ts to be executed during pain assessment of children with neurodegenerative disorder. This is to make the healthcare staffs and professionals learn regarding the way they can create a positive experience of the situation for the children with neurodegenerative disorder that would make them effectively cooperate to reveal their real painful feeling to provide them effective support.

The Kotter’s model mentions developed vision is to be communicated to the stakeholders so that they can work with honesty and handle the issues with effective involvement in the change process (Mohiuddin and Mohteshamuddin, 2020). As argued by Figueiredo and Potra (2019), failure to develop effective communication in change leads to confusion. This is because vision and the way to work along with sharing of ideas to continue working is inappropriately shared with stakeholders involve in making the change. In this respect, the action to be performed differently will be creating a social media page for the determined change where the vision along with strategies are to be described with reasons for the health professionals and workers to be accessed to understand focus of the change. Moreover, campaigns are to be organised in community healthcare centres and hospitals to make the healthcare staffs and professionals understand the vision of the change and be involved in making the change successful.

The next stage of Kotter’s model informs that obstacles in executing the change are to be removed so that no barriers are faced in making the change (Carman et al., 2019). As argued by Günay and Kılınç (2018), failure to remove obstacles in establishing any change leads to hindered quality improvement within the determined time. This is because the individual involved in change remain involved in coping with the obstacles which lower their efficiency to work as resources are depleted and time is wasted in the process. In this context, the action to be executed differently in establishing the change is asking stakeholders to be involved in the change through an online survey about their problems with making the change. On the basis of the identified problems, solutions are to be developed in resolving the obstacles. Another action to be performed in resolving obstacles in making the change is mentioning probable reward to be accessed by the healthcare staffs on following the accomplishing the quality improvement.

The next step is creating short-term wins that is developing short-term targets in making the change (Kumar et al., 2018). This is important as short-term wins assist in evaluating the immediate changes in the strategies for change to be made so that effective gains can be reached for long-term (McCarthy et al., 2019). In this context, short-term wins such as enhanced pain assessment in children of 8-9 years of age will be performed. On the basis of the success, changes are to be made for long-term implications of the change. The anchoring to change is to be established in the end for ensuring it becomes integral part of the quality improvement (Kumar et al., 2018). In this context, effective support to the healthcare staff and professionals will be provided so that they do not face hindrance in implementing Adolescent Paediatric Pain Tool (APPT) for making effective pain assessments for the children in the community.

Establishing Measures

The measurement of the success of change in making an improvement will be executed for the current project by collecting qualitative as well as qualitative data. As asserted by Hammersley (2017), the limitation of quantitative data is that it creates difficulty in data analysis. This is because of the improper presentation of the target population and the objective presentation of data. In contrast, the study by Mitra et al. (2018) mentions that the limitation of qualitative data over quantitative data is potential biasness in results. This is because of the influence of the researchers in the presentation of the data. However, mixed data assist in effective evaluation of data and reach data analysis because the limitation faced with qualitative data would be resolved by the strength of the quantitative data and vice-versa (Niedbała et al., 2019). Thus, the mixed data collection will be used in measuring the success of the quality improvement.

The qualitative data for measuring the success of the change will be gathered by executing survey of children as patients and their parents. This is because numerical data through the survey is easily collected and within minimum time which also assist in determining greater accurate judgement for the success of the change. Moreover, quantitative data is objective and reliable and is gathered in logical, comprehensive and analytical way that highlight key findings (Creswell and Creswell, 2017). The survey will be executed by providing feedback form containing objectives questions to be answered by the children and parents. Moreover, an objective questionnaire will be provided to nurses and health professionals to report their level of efficiency with the use of the PPP for children with neurodegenerative disorder for their pain assessment in community. In contrast, the qualitative data regarding the success rate of the quality improvement will be gathered through interview of the healthcare professionals and carers along with children with neurodegenerative disorder as patients.

The interview will be semi-structured and executed in a face-to-face manner with the help of skype. This is because interview helps in providing detailed understanding of the attitudes and feelings regarding the change along with the amount of success achieved for pain assessment regarding children as patients (Lauterbach, 2018). The semi-structured interview has the advantage of prepared questions which assist in forming the basis of the conversation with gradual in-depth information being collected during the extension of the interview (Roulston and Choi, 2018). As argued by Thorpe et al., (2018), the unstructured interview has the limitation of setting proper course of the interview. This is because the interviewer has no set questions to be used to initiate the process in a systematic way due to which increased time is taken to gather the potential data required for the aimed study. It also leads to gather data which is difficult to be analysed as a large amount of information are gathered at a time. Thus, the semi-structured interview is preferred over an unstructured interview to gather qualitative data in measuring the success of the quality improvement.

On the basis of the gathered baseline mixed data, the PDSA cycle will be implemented to determine the level of improved achieved and further actions required to be implemented in making the change continuous and stable. The PDSA cycle stands for plan, do, study and action (Crowfoot and Prasad, 2017). The plan in the current quality improvement project is achieving enhanced pain assessment of children as patients in the community through the use of effective pain assessment tool. The plan is important as wide number of children with neurodegenerative disorder as patients in the community in the previous studies are ignored to be assessed for their pain which has adverse physiological, social and physical impact on them. The Do stage indicates testing the accuracy and success of the change (McNicholas et al., 2019). In this step, the Cause and Effect Diagram or Fishbone diagram along with Histogram will be used. This is because fishbone diagram helps in analysing the qualitative data to explore the key factors as per category that boosted any positive and negative change in results (Venkatesan and Merlin, 2019). In contrast, the histogram helps in plotting qualitative data against focused parameters in the plan to determine the numerical efficiency or success of the determined plan (Gentle et al., 2020).

The checking phase include reviewing the existing results and identifying the learning achieved from the process (Laverentz and Kumm, 2017). As argued by Mushta et al. (2018), failure to review the results regarding the change makes individuals unable to identify the gaps to be further fulfilled in making the change effectively. Thus, in this phase, for determining the success of change, the results developed in the do phase will be analysed and reviewed to determine the extent to which the determine plan of making effective pain assessment for children with neurodegenerative disorder in the community is reached through the executed change in care delivery. In Act phase, actions are mentioned to be taken based on the learning from previous step (Crowfoot and Prasad, 2017). As argued by Erwin et al. (2021), failure to take actions based on reviewed results in unstable change of quality improvement. Thus, in this respect, the amount of success developed will be compared to the objectives and actions are to be set to fill the identified gaps in making the change effectively.

Governance and Ethics

In the quality improvement project, no ethical and governance issues are faced. This is because effective confidentiality of the participants involved in the project is ensured by avoiding to share any personal data under any condition without their prior consent. The four ethical principles include autonomy, justice, beneficence and non-maleficence (Foley and Vale, 2017). The autonomy in the project is maintained as opinions from the stakeholders in developing the strategy for the project is gathered and they are provided freedom to involve in the project. The study by Newton et al. (2017) mentions that failure to maintain justice and beneficence in making any change leads to discrimination and hindered health condition of patients in healthcare. In making the current change, beneficence is ensured as actions are taken in each context by considering the benefit of the children with neurodegenerative disorder as patients. Moreover, justice in developing the project is maintained because consideration of the cause is determined by evaluating patients of nature irrespective of sex, race, religion and others. The non-maleficence is maintained in the study which is evident as no actions are performed which would create negative impact of the children’s health due to the determined change.

Conclusion

The project concludes that pain assessment in children with neurodegenerative disorder is a challenging task due to their lack of participation in the process, hindered presence of pain assessment tool, limitation of the existing pain assessment measure and others. Thus, the current plan is developed to improve pain assessment of the children with neurodegenerative disorder as patients through encouraged use of effective pain assessment tool to ensure their better health outcome.

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