Quality of life in childhood advanced cancer: from conceptualization to assessment with the Advance QoL tool

Identification of QoL domains

A total of 20 potential participants were contacted (10 children and 10 parents). The final sample consists of 7 patients (4 girls, 3 boys, aged 13 ± 4 yrs) and 10 parents (8 mothers, 2 fathers). The overall participation rate was 85% (17/20, but one mother interview could not be transcribed due to equipment failure). Patients had been mainly treated for refractory leukemia and sarcoma.

Following the qualitative analysis of responses by parents and patients, we found 16 themes describing how parents spontaneously conceive of QoL (Table 1). Eleven of these themes were shared by patients and no additional theme was spontaneously reported by this group. Afterwards, the part of the interview using cards permitted participants to talk about aspects they would not have mentioned spontaneously despite them bearing importance (e.g. Feeling heard). By considering theses new themes with the 16 previously identified and by combining them with those of professionals already collected, we established a model of QoL based on seven domains: physical, psychological, social, feeling heard, autonomy/independence, pursuit of achievements, and pleasure. For brevity, we offer below an overview of the original findings.

Table 1 Quality of Life themes spontaneously identified in verbal material of 7 patients and 9 parents confronted with pediatric advanced cancer

As expected, both patients and parents perceived physical, psychological and relational well-being as core aspects of QoL. Pain management was considered a central aspect (physical well-being), but the most salient domain in their responses was social connectedness (social domain).

F2: “Being surrounded by family and friends. I think that is the most important thing for him.”

I : “What is the most important thing for you to have the best possible day? P6: Family”

The possibility to experience moments of pleasure was also evoked by participants from the very start of the interview. For patients and parents, pleasure could be experienced through simple activities.

P3: “For me a good day is to have fun, not to think about illness. [ … ] I like to go shopping, uh … going to the movies. It’s less common but I mean like … going out … playing with my dog. [ … ] Sometimes, I watch hockey because it’s my favorite sport. And uh … I play a little bit of video games. It is very important to have fun, and just laughing always feels good, because … well when you usually laugh, you don’t think about something that makes you unhappy, you think about something that makes you happy … ”

Parents spontaneously insisted on how important it is for their child to be able to go on with activities they used to do before being ill, and to continue to do things as other children do, as long as these are adapted to their condition.

M5: “It’s important for him to play basketball. Sometimes dad goes with him just to do dribble, so they can do dribbles, but because of his collar, sometimes it’s harder [ … ] If he didn't have the collar, if he didn't have restrictions, he would still play [ … ] Because, the fact that he can’t participate affects him. It affects him a lot, that’s why we try to fill that void by accompanying him to the games [ … ] When he goes to a game, for him … , it allows him to stay in touch with the sport he loves … ”

Although not spontaneously, the patients confirmed this topic when they were presented the cards To do an activity like before the disease and To do an activity like kids of your age. A majority endorsed them, suggesting these activities contribute to a sense of normalcy. It also apparently distracts their attention from the illness.

I: “ Do an activity like you did before your illness » P4: It’s very important for me … It makes me think that I’m a little bit back to the way I was before and that the disease hasn’t affected me that much … I still think it’s important to be able to do things the way they were before because it makes me feel better … I find little activities, even if it’s minimal, I can do the same as before, I’m like … very happy.”

Children repeatedly mentioned their desire to keep up with school. They wished to maintain contact with friends and wanted to continue learning new material. Continuing school, even at the hospital or at home and as little as once a week, helped them feel they were fulfilling their potential, and again supported a sense of normalcy and connectedness.

P5: “Going to school is important to me, because I'm a very academic person and I like it … and school, it's the only part of my life that is normal [...] Even if you're sick, you know that you might not make it through the year, you might have to repeat a year, but you're going to have made the effort, you'll grow up anyway.”

Both groups insisted upon the need to maintain a certain degree of autonomy. However, when being presented the cards “having a sense of control” which represented this need from the perspective of professionals, participants were confused about its meaning and asked for details. Referring to autonomy was far clearer for respondents.

M3: “Make decisions on your own. Yes, yes, yes, she has to make decisions, if only... which pair of shoes or... We also agreed, because I put [her] fentanyl patches … she knows it's to remove the pain, the sores, but she must see them. It's okay for me to put them on, but she has to have access … in her eyeline, she has to see them, because her nurse said at one point that we can put them on her back, but she was like, “no, no, no, no, I have to see them.” So, she handles it ...”

Respondents also confirmed the importance for patients of feeling heard and recognized by others as individuals beyond the disease.

P3: “When someone asks you “Are you ok?” “Do you have the right medication?” I feel reassured, because … like … they really want you to feel good, and you know … you know you’re saying something and they’re going to do everything they can to help you feel better.”

M8: “To be listened to, I think it is already a basis to feel appreciated, loved. [ … ] If someone listens to us, even if she doesn’t bring or say anything major, but the … uh … That’s what is going to have an impact on them, the fact that they feel listened to and understood.”

To summarize, we found that the verbal material on QoL was consistent across groups of patients and parents and that themes resembled those previously reported by professionals in the context of advanced cancer. The themes could be synthesized in 7 life domains. Based on this finding, we formulated a general model of QoL applicable to pediatric advanced cancer (Table 2). As much as possible, we used the wording of patients and parents from the present study to describe domains and their corresponding themes. For instance, we replaced “sense of control” by “autonomy” to improve understandability and avoid professional jargon.

Table 2 Model of Quality of Life in pediatric advanced cancer based on perspectives of patients and parents from the present study (N = 16) and professionals from a previous report (N = 20)aDevelopment of Advance QoL

In line with this operational definition of QoL in advanced cancer, we elaborated the preliminary version of the Advance QoL tool. Its aims is to support clinical judgment and help the healthcare team, patients and families exchange on the important topic of QoL. So far, parental and professional versions have been developed. The tool includes a series of instructions, and seven short descriptions, for each domain of QoL. The domains were defined using the words of respondents from the present study and examples were included to optimize understandability. Following recommendations by healthcare professionals and consistent with the observation that a child’s condition can change rapidly in advanced care, we chose a 1-day interval to assess children status [9, 27]. Respondents are asked to complete three simple consecutive tasks: 1) Report their level of agreement about the positive contribution of each QoL domain on the patient’s well-being, 2) provide comments on the reported levels and indicate targets for future interventions, 3) report each level of agreement on a radar chart. In line with the multidimensional QoL model, we kept dimensions independent from one another (no total score is computed). The radar chart offers a graphical overview of the strengths and weaknesses of the patient’s current status as perceived by respondent.

Content and format validation of Advance QoL tool

Overall, experts positively evaluated the tool’s clarity, relevance, format, and usability. They commented extensively on each section of the tool requiring improvement. Here are the results of the experts’ evaluation of the tool based on the criteria evaluated quantitatively, followed by the adjustments made for each of these criteria according to the qualitative suggestions retained.

Clarity

Although experts considered instructions as clear (CVI = 0.80), they suggested simplifying the language and offering additional oral explanations to help the respondent follow the steps to complete the tool. Following these recommendations, we clarified the instructions paragraph in the revised version of the tool. We also added a step number (#1, #2, #3) next to each instruction to help respondents navigate the tool.

As for QoL domains, the CVI showed lower levels in the following: Physical (0.60), Psychological (0.47) and Feeling heard (0.73). Experts mentioned that the negative wording used initially to present the physical and psychological domains was confusing. Thus, we rephrased them to harmonize reporting across domains. All domains are now framed positively. For the Feeling heard domain, the original wording invited the respondent to imagine the child’s feelings. This wording was found difficult to understand and experts recommended to ask respondents more directly if they considered that the patients were heard by their entourage and healthcare team. We implemented this accordingly in the revised version.

Relevance

Data from interviews and the quantitative survey confirmed the tool’s design was coherent with its aim of monitoring patients’ QoL (CVI = 100). Experts considered the tool as a promising instrument to facilitate case management and the selection of appropriate individual targets to improve a patient’s QoL. Experts agreed on the tool’s potential to facilitate communication within the healthcare team (CVI = 93.3) and with the family (CVI = 93.3).

Both in their verbal commentaries and the quantitative survey experts considered the three-point response scale (agree, partially agree, disagree) as relevant (CVI = 100). They also appreciated the opportunity to provide explanations and to identify targets for future action (CVI = 86.7 and 92.9). They reported that this would allow respondents to take a step back and think critically on treatment planning, and perhaps improve decision-making involving the team and the family. One expert stressed that future users of the tool could complete these explanation-targets boxes even when ratings are already high as it could help identify which aspect should be maintained or reinforced.

The radar chart was also rated positively by the experts (CVI = 86.7). They reported it would be adequate to provide a quick overview of the respondent’s perspective of the patient’s QoL and spot domains needing improvement. They also reported it would ease comparisons between raters during case management meetings.

Finally, concerns were reported by the experts about the 1-day timeframe to estimate the patient status (CVI = 0.23). Although experts agreed that the child’s QoL should be assessed over short periods in the present context, they mentioned the difficulty for some professionals to use this timeframe as encounters may be less frequent than once a day (e.g. psychosocial support). Experts suggested that instructions should refer to the last encounter with the patient. Experts also advised us to add an additional box to clarify contextual elements that could influence their current appreciation of QoL. These adjustments were implemented in the last version of the tool.

Format and usability

The tool was unanimously considered easy to use (CVI = 100). The interviews highlighted the experts’ appreciation of the double-sided page format. To further improve the presentation, experts suggested airing out the description of the dimensions using bullet points. Importantly, they evaluated completion time as adequate for healthcare professionals (CVI = 80) and for parents (CVI = 85.7). These changes were made in the last version. Some experts suggested that in some cases, the family could be supported by a professional during completion in order to provide emotional support.

To summarize, we collected encouraging quantitative evaluations by experts on the preliminary version of Advance QoL. To improve clarity and relevance, we implemented most of their qualitative suggestions, which led us to a usable refined version (Fig. 1).

Fig. 1figure 1

Advance QoL: A tool for assessing Quality of Life in children with advanced cancer

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