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Palliative Care is the care of people who have been diagnosed with a life threatening or illness. It includes the relief of suffering and management of pain and other symptoms. According to World Health Organization (WHO), palliative care should be an integral part of comprehensive care and support given as part of a continuum of care from the time the incurable disease is diagnosed until the end of life [1].

In Africa, Palliative Care is looked at from the continent’s diverse needs, especially in Sub-Saharan Africa, where poverty is rampart and the components of Palliative Care include; practical care, pain and symptom management, emotional support, clean water, income generation, nutritional support, shelter and spiritual care make. These make a difference in improving the quality of life for thousands suffering from life-threatening illnesses such as HIV and Cancer [2-5].

Significant advances have been achieved in the provision of palliative care in Africa to manage prevalent and burdensome problems experienced by those with incurable terminal disease [6]. However, there is very little evidence for outcomes of effectiveness of this care, a common problem in developing country contexts, where health systems research is under-funded [6,7]. A primary reason for this dearth of evidence is the lack of appropriate and validated outcome tools [7,8]. Advanced care clinicians in Africa identified the need for appropriate outcome tools [9], and suggested that these tools should be appropriate for both HIV and cancer paediatric patients, address family and patient outcomes, be locally validated [10], and be relevant to all stages of the disease trajectory [11]. In addition to validity and reliability, key principles of outcome tools are brevity and multidimensionality, i.e. addressing physical, emotional, spiritual and social problems of both patients and families. Self-completion tools are often inappropriate for patients with advanced illness, and may not be feasible in populations with limited literacy [2,7,12].

The statement underlines the need for well-designed and validated tools to measure children’s outcomes that assessment is the most important aspect of delivering children’s palliative care. The measurement of pain and symptoms must be conducted using methods recognizing those children’s experiences and expressions of pain and symptoms mediated by age, experience, family, and culture. A study conducted in Uganda identified that skills to communicate with children were the greatest need among palliative care health professionals and the lack of standardised tools to measure palliative care needs in children compounded the challenging task of providing age appropriate and culturally acceptable paediatric palliative care.

The needs evaluation questionnaire

The PaedsQL4 (Pediatric Quality of Life Inventory) (Children's Hospital and Health Center, San Diego, California) is a modular instrument for measuring health-related quality of life (HRQOL) in children and adolescents ages 2 to 18. The PaedsQL4 Generic Core Scales are multidimensional child self-report and parent proxy-report scales developed as the generic core measure to be integrated with the PaedsQL4 Disease-Specific Modules and consists of 23 items applicable for healthy school and community populations, as well as paediatric populations with acute and chronic health conditions. Pediatric patients' self-report of health-related quality of life (HRQOL) has emerged as an important patient-based health outcome. A practical, validated generic measure of HRQOL facilitates assessing risk, tracking health status, and measuring treatment outcomes in paediatric populations [9,10].

This tool has mainly been used in high-income countries. No study has validated this tool in Sub-Saharan Africa where the contexts and palliative care needs for children are said to be complex especially in view of high poverty levels, HIV and poor health systems. In view of the urgent need to develop culturally appropriate tools to accelerate the provision of quality palliative care in Africa, we adopted and adapted the PaedsQ4 inventory and tested it among HIV infected, cancer and children in the general paediatric wards.

Study design

This was a cross-sectional study. Both qualitative and quantitative methods were used to collect information. This paper reports quantitative results while qualitative results have been reported in a separate publication.

Study site

The study was conducted at the University teaching hospital in Lusaka which is the main referral hospital in Zambia.

Target population

Parents/ and legal guardians of HIV infected children or children with other chronic diseases attending ART or Oncology clinics, OPD or admitted to the general ward.

Children and youth eligibility

Children were recruited if they were less than 15 years and their parents/guardians had consented to taking part in the study. Eligible children were those with either with HIV or any other Chronic Disease at the time of data collection.

Sample size calculations for quantitative study

The total sample size required for both cancer and HIV patients was 100 guardians/child pair giving an overall of number of participants of 200. The sample size calculation was based on the following assumptions: Power of 80% and confidence level of 95%. The number of children with cancer was 300 the number of children on ART was 500 in 2012. Assuming the proportion of those with palliative care need to be 50% and worse expected to be 40% in each group.

Needs Evaluation Questionnaire was another quantitative tool which we applied to calculated the needs gap. This is a standard and validated rapid tool for needs as expressed by legal guardians on behalf of their children.

Data collection: recruiting participants and administering the questionnaires

All eligible participants were approached by the research team. The voluntary nature of the study was emphasised. They were assured of confidentiality. If they agreed to take part a consent form was given to them to read in the presence of the research team. Children were given an opportunity to know about the purpose of the study and why their parents/legal guardians had been approached to take part the age of the child was taken into consideration when providing information.

PaedsQL4 tool

We used to the PaedsQL4 tool to collect information from guardians with sick children. This is a standard rapid and valid tool for paediatric needs assessment from a point of legal guardians. The categories assessed include, physical, emotional, social and school functioning

Needs Evaluation Questionnaire (NEQ): This is a standard and validated rapid tool for needs as expressed by legal guardians on behalf of their children. This tools was used to collect information from parents and legal guardians of children with cancer or HIV or general paediatric conditions.

Data analysis

Needs gap analysis: We calculated the needs gap by subtracting the % of those which said “Yes” to requiring a particular need out of 23 items from those who said “No”. i.e Needs gap=(Yes%-No%).

We compared means across the three groups of patients using ANOVA with p<0.05 indicating a significant difference

Factor analysis: We performed confirmatory factor analysis to determine the factors loading of the items in the NEQ and PaedsQL4 tool. The rotational method applied was Varimax with Kaiser Normalization. Items were retained if they had a co-efficient >0.5.

Part 1: Demographic characteristics of children whose parents accepted to take part in the study

There were 109 children/guardian pair participants. Most children were from the HIV ward (71) followed by Oncology (20) and General Ward (18). There were 54% male children and 46% were female (Table 1).

Table 1: Sex distribution of participants stratified by ward.

The age ranged from 0-16 years standard deviation 4.175. Mean age was 5.74. In terms of age distribution most participating children were aged 1-5 (43/109: 48.8% male and 52.2% Female) (Table 2). Most participants were the child’s mother (69.7%), with 13.8% of fathers and 16.5% other relatives (Table 3).

Table 2: Age distribution of children of participating parents.

Table 3: Sex distribution of guardian/parent.

Part 2: Reliability and applicability of the needs assessment (NEQ) tool

Generally there were very high needs Gaps across all hospital wards with 15/23 items having needs gap of >50%.

Overall the largest needs caps was in information domain. The item related to information about future prognosis (needs gap 70.3). The second highest overall needs gap were in item related to need for economic support. When wards were compared oncology ward 20/23 items had a needs gap of >50%. Higher needs gaps were noted in information about prognosis, and in economic support (need gap 90%). In the general ward, 19/23 item had needs gap >50%. The highest needs gap of 100% was noted in information about the treatment given to children.

The HIV ward had least needs gap with only 8/23 items having a needs gap of >50%. In this group information about future prognosis again had highest needs gap (63.4%) (Table 4).

Table 4: Needs Gap analysis for the 23 needs items.

The highest factor loading were in Information domain. Information about: Examination (0.852), treatment (0.832) and prognosis 0.769). Other factors which loaded highly were, need for spiritual help (0.909), need for economic assistance (0.842) and psychosocial support (0.854) (Table 5).

Table 5: Confirmatory factor analysis for the 23 items for needs assessment.

Part 3: Reliability and applicability of PaedsQ4 needs assessment tool

Out of the 109 children, 64 attended school while the rest did not attend. Among all the children represented the highest mean score was noted in pain and aches (Mean 1.28, std deviation1.248, feeling angry (mean 1.12 std deviation 1.192). For the 64 patients who attended school, the highest mean scores was in missing schools to attend clinics (mean 1.91,std deviation 1.080) and missing school because of feeling unwell (mean1.62 std deviation 1.162) (Table 6).

Table 6: PaedsQ4 assessments: Descriptive statistics for children admitted to UTH children, in Lusaka.

Cronbach’s test was used to assess the reliability of the 21 items that make up the peadsQL4. The results were separated for those items applicable to all (16 items) and those only applied to children attending school (5 items). Cronbach’s alpha for the 16 items which applied to all children was 0.903 which is considered very reliable. Reliability for the 5 items which assessed school functioning gave a Cronbach’s alpha of 0.744 (Table 7).

Table 7: Reliability test for the paedsQ4 assessment tool.

Reliability test was done for the three wards to see if there was a difference in the reliability of the paedsQL4 in assessing patients with different problems. ie. Oncology, HIV and general pediatric problems. Cronbach’s alpha was 0.882 for oncology patients, 0.893 for HIV patients and 0.897 for patients with general paediatric problems.

Table 8 shows that there were significant mean differences across the three categories of patients in all domains of functioning with oncology patients performing worst.

Table 8: ANOVA Comparing the mean between the three groups of parents in general, Oncology and HIV units.

Confirmatory factors analysis showed that 2 items were loading highly on the physical functioning factor. These were running and participating in sports (0.896). In the emotional functioning domain, 2 items loaded highly on factor analysis, feeling sad (0.842 and angry (0.666). In the social functioning domain, highest loading were in 2 items, both related to making friends i.e getting along with friends (0.826) and friend wanting to be friend (0.847). In the school domain missing school to go to hospital loaded highly on factor analysis (0.842) followed by difficulty paying attention in class (0.716) (Table 9).

Table 9: Confirmatory Factor analysis for the 21 items making up the paeds Q4 tool.

One challenge reported in the literature which prevent adequate provision of palliative care needs is the lack of validated tools for assessing palliative care needs especially among children [11-14]. Our study tested and applied two known tools for assessing palliative care needs in children. The tools tested were the paedsLQ4 and the Needs Evaluation Questionnaire (NEQ). The results showed that the paedsLQ4 and the NEQ needs assessment tools are applicable in the Zambian paediatric population. The reliability tests for both tools showed Cronbach’s alpha of over 0.8. We therefore were confident to apply these tools to assess the needs for three different paediatric population seeking cancer, HIV and general paediatric services at the University teaching hospital in Lusaka, Zambia.

At the time of this study, the first African paediatric version of the APCA African Palliative Outcome Scale was still undergoing validation [15].

Generally, there were significant palliative care needs gaps with 15 of the specific needs assessed revealing a need gap of over 50%. This was based on the needs assessment questionnaire (NEQ) which has previous been applied to adult patients but has never been applied in children or low-income settings [16]. The tool was found to be fairly reliable with Cronbach’s alpha of 0.874.

Overall the largest need gap was in information domain. Information especially about the long-term outcomes of children’s illness was very important to parents and guardians. They wanted to know about what would happen to their children in the future with respect to the prognosis. Similar findings have been reported in other studies which have shown that sincere discussions about the future prognosis was a major need for families and patients [17]. The second highest overall need gap was in economic support domain. These findings agree with other studies conducted in Sub-Saharan Africa which have shown that palliative care in these settings cannot be separated from socio-economic challenges that families face [6,18].

In terms of symptoms management, pain remained the highest unmet need for children admitted to the University teaching hospital. These findings were supported by the qualitative study findings where most parents expressed concern that their children were receiving in adequate pain relief (result reported elsewhere). This problem was more pronounced among children with cancer, but it is of note that children on the general ward also reported inadequate pain relief. Other studies have also reported that pain management is a big challenge in sub-Saharan Africa [15,19]. This has been attributed to inadequate knowledge on pain management by clinicians and inhibitory laws that prevent access to morphine [15,19]. This might be true for Zambia where palliative care training is not routinely taught to clinicians and restrictive laws prevent wide access to morphine.

Missing school was one issue that was raised by most families. For children admitted or needing to attend clinics, they missed a lot of classes and this was affecting their performance. This need has not been adequately addressed as classes for those admitted are not routinely offered and those attending clinics were given dates which conflicted with their school calendar.

In this study we also used the paedsLQ4 questionnaire which has been used in high income countries to assess needs among children [11]. Our results showed that this tool is applicable in the Zambian context. The tool was reliable with the Cronbach’s alpha for the 16 item of 0.903.

When we compared the three groups of patients i.e. oncology, HIV and general ward using the paedsLQ4, we found significant mean differences across these three categories of patients in all domains of functioning.

We performed a confirmatory factors analysis to identify items with higher loading from the paedsLQ4 tool. Results showed that two items loaded highly on the physical functioning factor. These were running and participating in sports (0.896). These findings support the need for pain control and enabling environment for children to play even when they are unwell. Playing is an important part of child growth [20]. Our qualitative results also confirmed the lack of recreation activities for children admitted to the University teaching hospital in Lusaka.

The emotional functioning domain, showed that one item loaded highly on factor analysis, (feeling sad, coefficient=0.842). This finding point to the need for psychological support not only for families but children as well.

The World Health Organization (WHO) pioneered a Public Health Strategy for integrating palliative care into a country's health care system. This strategy include advice and guidelines on how governments can priorities and implement both national palliative care programs and national cancer control programs where palliative care is one of the four key pillars of comprehensive cancer control [21]. Zambia could benefit from adopting this approach in view of the gaps identified in this study, which require integration and coordination of palliative care services.

The study has a number of limitations that must be considered when interpreting the study results. Firstly the study was a crosssectional survey hence we cannot determine causality based on these results. Secondly, the study was done in the urban settings, the findings may not apply in rural settings. Thirdly the study was done at the University Teaching Hospital which is the main referral centre and hence the sample might not be representative of palliative care needs in the general population.

This study applied two quantitative tools for assessing palliative care needs in Children. The results showed that the tools were fairly reliable and applicable in the Zambian urban context but further validation is required for rural settings. The findings indicate a significant needs gap for children’s palliative care services in Zambia. The major family needs were economic and bereavement support. There was high demand for information for families, which health workers did not adequately provide. Pain control remained sub-optimal especially for children with cancer. The findings indicate huge needs gap for child palliative care services.