The JMML Foundation Family Survey was created to support the Foundation’s Strategic Plan objectives involving education and charity to the families and caregivers of children with JMML. This 2nd JMML Foundation Family Survey served two purposes:
A 2nd JMML Foundation Family Survey was solicited online in May 2007 for 2 weeks. 48 people from 9 countries and 18 U.S. states completed the survey. 60% were mothers of children with JMML and 21% were fathers. 77% of the responders had a relationship with a child who was post-transplant and recovering from JMML.
24 questions were asked pertaining to educational and emotional support issues for families. Of these, the ones families rated high in both importance (>4.5 out of 5) and their experiences with them (>4 out of 5), termed “Best Practices,” were the JMML knowledge of their transplant physicians, hematologist/oncologist physicians, and nurses, as well as their ability to communicate with other families with children with JMML. The ones families rated highest in importance (>4.5) but lowest in their experiences with them (>3), noted as “Focus Areas,” were the ease in finding information about JMML and the completeness of that information, existing support for siblings and parents of deceased JMML children, and their ability to communicate with their own family. Comparisons with 2005: Respondents in 2007 felt that nurse knowledge of JMML was significantly greater this year (4.04 vs. 3.64 in 2005) and more important (4.72 vs. 4.27 in 2005). They found it easier to find information about JMML this year than in 2005 (2.41 vs. 1.9 in 2005) and rated the completeness of information higher as well (2.77 vs. 2.33 in 2005). Support ratings for siblings of deceased children were raised this year (2.42 vs. 1.89 in 2005), as were marks for existing support for parents of deceased JMML children (2.58 vs. 2.36 in 2005). The top four focus areas were the same this year as last year. There is no information as to why there would be a marked change in the ratings of nurse knowledge, though the expansion of the Foundation website and the development of the JMML Rainbows support group may explain the other increased ratings.
10 questions were asked pertaining to financial concerns for JMML families. Respondents noted paying the highest average dollar amount for JMML children for stem cell transplants (avg $8,313), other ($5,347), and lodging during transplants ($4,483). The items they noted having had to spend the greatest percentages out-of-pocket were for travel to/from medical care (60%) and supplies/toys during hospital stays (48%). The categories for which respondents reported paying the lowest average dollar amount were for respite care (avg $183/respondent) and counseling ($932). Spending averages could not be compared to 2005 survey results as dollar amount choices were added to this year’s survey. Noting that the “other” category was so large, the descriptions of these expenses in the comments section should be added to this question in next year’s survey. Comparisons with 2005: In 2005, 42% of respondents mentioned that they paid 75-100% of their total costs for travel to/from medical appointments. This agreed with the greatest percentage of out-of-pocket expenses measured this year. Overall, measurements from 2005 were not directly comparable with those of this year due to the addition of dollar amounts to this year’s survey.
In the open-ended comment section of this survey, all the same categories of comments from the 2005 survey arose with the exception of international country support, which no one commented on this time. One additional category of comment arose pertaining to positive feedback for the Foundation. Comparisons with 2005: Of the 55 total comments in 2007, two-thirds of the comments fell into 3 categories: the need for more, easy-to-find, updated information (18); positive feedback to the Foundation regarding the sharing of information, website, and the support group (11); and clarifications or requests regarding financial concerns. These comments suggest that the survey is focusing on the areas that are important to families, as 5 questions pertain to information and 10 questions pertain to finances. In 2005, 71% of comments noted fell into three categories: accurate, easy-to-find, easy-to-understand, and updated information (19); physician education and connection with families (10); and financial concerns (8).